Les publications de membres du CI3P
- Flora L., Bechellaoui L.. Mobilisation des savoirs expérientiels développés par les personnes à l’épreuve du TSPT au service du partenariat avec les professionnels. in ABC des psychotraumatismes. Paris : Ellipses, pp. 620-626.
- Flora L. (2024). « 20 ans de démocratie sanitaire : état des lieux et impact de la pandémie ». Revue de la société française d’histoire des hôpitaux, pp. 41-46
- Rubinstein S. (2024). « La place de l’usager en psychiatrie : l’exemple de l’hôpital Sainte-Marie de Nice (1860-1986) ».
Revue de la société française d’histoire des hôpitaux, pp. 54-64.
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Liguori F. (2024) Qui sont les patients partenaires formés par le DU Art du soin en partenariat avec le patient ?
Le partenariat de soin avec le patient: analyses : Université Côte d’azur, N°. 7, pp. 64-90.
- – Grenier C., Flora L., Ponsignon F. (dir.). (2024). « Experience in Health Innovation: Ephemeral Fashions or New Paradigm? – Crossed perspectives in the health ecosystem », London :Editions Wiley.
- Flora L. (2023). « La question du patient et de ses données numériques dans un environnement de la santé en cours de digitalisation« . Le journal de la médecine légale, 2023/3, N° 3, pp 16-21.
- Vanier M.-C, Flora L., Lebel P. , Wiesner Conti J., Picchiotino Zokka P. (2023). Un professionnel de santé qui exerce en collaboration : la pratique collaborative en partenariat avec le patient. in Comment mieux former et évaluer les étudiants en médecine et en sciences de la santé ? 2ème édition (1ère édition 2016), Louvain la Neuve: De boëck, pp. 65-88.
- Flora L., Grenier C., Ponsignon F. (dir.). (2023) « L’expérience dans l’Innovation en santé : modes éphémères ou nouveau paradigme ? – Regards croisés dans l’écosystème de la santé ». Londres : Iste.
- Ravot M., Flora L., (2023). » Une brève histoire des mutations du secteur médico-social de ces dernières décennies. Entretien avec Marielle Ravot. », dans L’expérience dans l’Innovation en santé : modes éphémères ou nouveau paradigme ? – Regards croisés dans l’écosystème de la santé », Londres : Iste.
- Flora L., Darmon D., Darmoni S., Grosjean J., Simon C., Hassanaly P., Dufour J.-C. (2023). « L’aide à la prescription d’application mobiles de santé : Une innovation dans et par la relation médecin patient », dans L’expérience dans l’Innovation en santé : modes éphémères ou nouveau paradigme ? – Regards croisés dans l’écosystème de la santé ». Londres : Iste.
- Flora L., Casta C., Munck S., Fauré S., Gasperini F., Rubinstein S., Darmon D., Ravot M., Bouchez T. (2023). Attribuer un prix de thèse de médecine générale en partenariat avec les patients partenaires : une expérience démarche partenariale. Le partenariat de soin avec le patient: analyses : Université Côte d’azur, N°. 6 pp. 67-97.
- Rivest J., Karazivan P., Desbeaumes Jodoin V., Flora L., Lambert C., Tranulis C., Daneault S. (2023). Listening to Cancer Patients’ Narratives During Residency : A Pilot Study on a Communication Skills’ Workshop Involving Patients-Partners. Journal Patient Experience. 2023 Jun 28 ;10:23743735231183674. doi : 10.1177/23743735231183674.
- Flora L. (2023). « Savoirs expérientiels en santé et expertises patients ». dans Troubles dans le monde du bénévolat, (Dir. Ferrand-Bechmann D.), Paris : Chroniques sociales, pp.60-67.
- Lunel A., Flora L. (2023) » Avant propos. » Le Journal de droit de la santé et de l’assurance maladie, N° 36, p. 9.
- Flora L. (2023). » La place des patients au 21ème siècle : l’exemple de l’implication des patients partenaires avec le CI3P dans l’environnement numérique. » Le Journal de droit de la santé et de l’assurance maladie, N°36, pp. 10-18.
- Rubinstein S. (2023). » L’e-santé mentale : miroir aux alouettes ou futur des soins psychiatriques ? » Le Journal de droit de la santé et de l’assurance maladie, N°36, pp. 25-33. ( Ecouter l’émission sur la santé mentale et le numérique au sein duquel cet article et mentionner pour sa pertinence en cliquant ici)
- Flora L. (2023). « Le partenariat de soin avec le patient : une approche du soin du 21ème siècle ». Rééducation Orthophonique. N° 293/294 – mars/juin, pp.23-34.
- Flora L. (2023). « Une réponse citoyenne aux contextes et enjeux contemporains, le patient partenaire ?, (Dir. Schaad B.), in(IN) hospitalités hospitalières, conflits, médiation, réconcilation ? Editions médicales Suisse, pp. 53-66
- Flora L. (2023). L’expertise patient, pair aidant. La lettre du psychiatre. Vol. XIX, N° 1, janvier-février-Mars, pp.. 17-20
Bouchez T., Rousseau A., Fiquet L., Meury P., Flora L. Virot G., Bardet J.-D., (2022). » Coopération interprofessionnelle, organisation pluriprofessionnelle. Médecine générale pour le praticien. Issy les Moulineaux, Elsevier-Masson, pp. 517-525.
Brasseur M., Flora L., Grenier C. Ponsignon F. (2022). « Le Soin, un travail invisible en manque de reconnaissance« . Editorial in La valeur du Soin et du travail invisible. RHIME (Revue interdisciplinaire management, homme & entreprise). Vol.11, N° 47, printemps 2022, p. 2
Rubinstein S. (2022). Médiateur de Santé/Pair et psychoéducation en santé mentale : une rencontre sous les auspices de l’innovation dans le soin.Le partenariat de soin avec le patient : analyses, N°5. pp. 45-64.
Guillot N., Flora L., Benattar J.-M., Ravot M., Pouillon M., Fauré S., Gasperini F., Rubinstein S., Filali S., Rousselin L., Bouchez T., Pop C., Darmon D. « (2022). « La participation à la réforme du 2ème cycle des études de médecine à travers les ECOS mobilisant des patients formateurs et du Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P) et des étudiants en médecine ». Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp. 43-44.
Flora L., Benattar J.-M., Ravot M., Darmon D. (2022). « Une entité dédiée à la mobilisation des patients au cœur d’une faculté de médecine : Le Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), point d’étape« . Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp. 14-16.
Flora L., Bouchez T., Ravot M., Darmon D. (2022). »L’accompagnement de thèse de médecine générale avec des patients, nouvelle piste pédagogique de partenariat de soin avec le patient« . Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp.45-46.
Flora L., Benattar J.-M., Darmon D., (2022). « La participation des patients formateurs au Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P) en temps de covid-19« . Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp. 47-48.
Flora L. (2022). « La médiation, une réponse aux attentes des patients ». Revue Médicale suisse, N°18, pp.550-551
Flora L., Darmon D., Darmoni S., Grosjean J., Simon C., Hassanaly P., Dufour J.-C. (2022). « Innover par l’aide à la décision dans la relation médecin-patient d’application mobiles : la recherche ApiAppS ». Le partenariat de soin avec le patient : analyses, Université Côte d’azur, N° 4, pp. 73-94.
Flora L. (2021)., « Recognition of patients’ experiential knowledge and co-production of care knowledge with patients and citizens in the 21st century in « Altering Frontiers Organizational Innovations in Healthcare. London : Wiley.
Darmon D. (2021). » L’exercice médical à travers les mutations de la société à l’émergence du partenariat de soin avec le patient « . Le partenariat de soin avec le patient : analyses, N°2 : Université Côte d’azur, pp. 119-130.
Rubinstein S. (2021). Être médiateur de santé pair, pair aidant en France, les paradoxes de la professionnalisation des patients, Le partenariat de soin avec le patient : Analyses, N°2, pp. 80-92.
Flora L. (2021) « Reconnaissance des savoirs expérientiels des patients et coproduction de savoirs de soins avec les patients et les citoyens au 21ème siècle » in « Les défis du décloisonnement : Innovations organisationnelles en santé, Londres : ISTE éditions, pp. 27-50.
Flora L., Koenig M.(2021). « La question du rétablissement et du patient partenaire », in Manuel de la psychiatrie » 4ème édition. (coord. Luc Mallet, Julien Guelfi, Frédéric Rouillon), Paris : Edition Elsevier Masson, pp. 779-782.
Bonardi C., Karcher B., Collazzo G., Barbaroux A., Balez E., Faure S., Halloy A., Flora L. (2021). « Partenariat avec les patients : les leçons d’une pandémie », Neuropsychologie, 13 (2), pp. 116-120.
Pomey M.-P., Clavel N., Normandin L. Del Grande C. Ghadiri D. P., Fernandez-McAuley I., Boivin A., Flora L., Janvier A., Karazivan P., Pelletier J.-F., Fernandez N., Paquette J. Dumez V. (2021) « Assessing and promoting partnership between patients and healthcare professionals : co-construction of the CADICEE tool for patients and their relatives » Health Expectations. Vol. 24, Issue 4, pp.1230-1241
Barchewitz M., Charels M., Flora L., Gueroult-Accolas, L., Honoré S., Allenet .B, Hache G.(2021). »Connaissances et représentations sur le partenariat patient : enquête auprès des pharmaciens. » Le Pharmacien Hospitalier et Clinicien. Volume 56, Issue 4, pp. 345-354
Chansou T., Benattar J.-M. (2020). Enseigner l’exercice médical par l’Art et les savoirs expérientiels avec la participation du patient. ». La revue sur le partenariat de soin avec le patient : Analyses, N°1, le centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université Côte d’Azur, pp. 30-49.
Pétré B., Louis G., Voz B., Berkesse A., Flora L. (2020). »Patient partenaire : de la pratique à la recherche. » Santé publique, Vol. 32, N° 4, Juillet-août, pp. 371-374
Faure S., Halloy A., Karcher B., Flora L., Colazzo G., Barbaroux A., Balez E., Bonardi C. (2020). « Polyphonies sur les enjeux du partenariat patient au temps du COVID-19, Revue de Neuropsychologie, Neurosciences Cognitives et Cliniques, V. 12, N° 2, Avril-mai-juin 2020, pp. 232-237.
Carayol-Ravot M. (2020). Covid-19 : crise sanitaire, confinement et maladies chroniques. Impact du confinement sur l’expérience patient et le partenariat entre patients et professionnels de santé. Mémoire de Master de santé publique. Université Aix Marseille.
Flora L., Darmon D. Benattar J.-M. (Coord.).(2019), Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur.
Ghadi, V., Flora L., Jarno, P., Lelievre, H. (2019). The Engagement Conundrum of French Users. In M.-P. Pomey, J.-L. Denis, & V. Dumez (Eds.), Patient Engagement : How Patient-provider Partnerships Transform Healthcare Organizations : Springer International Publishing, pp.199-231.
Bibliographie sur le partenariat de soin avec le patient dans l’enseignement en pédagogie médicale et sciences de la santé :
- Ashdown, L., Jones, L. (2024). The time for patient partnership in medical education has arrived : Critical reflection through autoethnography from a physician turned patient. Medical Teacher, 46(10), 1322‑1327.
- Thomas B. (2024) Vers une participation effective des patients à la formation initiale des médecins : retour sur les travaux menés par le ministère chargé de la santé. Le partenariat de soin avec le patient: analyses : Université Côte d’azur, N°. 7, pp. 10-34.
- Schusselé Filliettaz, S., Laroussi-Libeault, L., Rochat, S., Gaillard Desmedt, S. (2024). Retour d’expérience sur la mise en œuvre du partenariat-patient dans une formation continue en Suisse. Santé Publique, N° 36, pp.57-68. https://doi.org/10.3917/spub.243.0057
- Ashdown, L., Jones, L. (2024). The time for patient partnership in medical education has arrived : Critical reflection through autoethnography from a physician turned patient. Medical Teacher, 1‑6. https://doi.org/10.1080/0142159X.2024.2308065
- Thomas B., Fourcade A. Morlat P. (Dir.) (2023). Etat des lieux et perspectives pour le déploiement de la participation des patients dans la formation initiale des médecins. Ministère de la santé et de la prévention.
- Lartiguet P., Broussal D. Saint-Jean M. (2023). L’invention du patient formateur : repenser l’ingénierie de formation et promouvoir le partenariat en santé. Phronesis. 2023/4, Vol. 12, pp. 129-146.
- Couturier Y., Poitras M.-E., Poirier M.-D. (2023) Par-delà le témoignage : les patients partenaires et la formation continue in L’expérience dans l’innovation en santé modes éphémères ou nouveau paradigme ? (dir. Flora, Grenier Ponsignon): London: Iste, pp. 263-276.
- Massé, J., Beaura, S., Tremblay, M.-C. (2023). Fostering the development of non-technical competencies in medical learners through patient engagement : A rapid review. Canadian Medical Education Journal, 14(4), 47‑69. https://doi.org/10.36834/cmej.73630
- Ferri P., Vivarelli C., Lui F., Alberti S., Movesti S., Serafini A., Di Lorenzo R., Amati G., Padula S. M. (2023) Evaluation of an interprofessional education intervention in partnership with patient educators. Acta Biomed. Vol. 94, N. 5 e2023250
- Alberti, S., Ferri, P., Ghirotto, L., Bonetti, L., Rovesti, S., Vannini, V., Jackson, M., Rossi, F., Caleffi, D. (2023). The patient involvement in nursing education : A mixed-methods systematic review. Nurse Education Today, 128,105875. https://doi.org/10.1016/j.nedt.2023.105875
- Hanson, M. D., Pang, C., Springall, E., Kulasegaram, K., Eva, K. W. (2023). Patient Engagement in Medical Trainee Selection : A Scoping Review. Academic Medicine : Journal of the Association of American Medical Colleges. https://doi.org/10.1097/ACM.0000000000005450
- Hatch, S., Fitzgibbon, J., Tonks, A. J., Forty, L. (2023). Diversity in patient and public involvement in healthcare research and education-Realising the potential. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13896
- Makins, N., Naidoo, T., Hassim, T., Babalola, O., Dormehl, C., Mkhabela, R., Degni, L., Motloutsi, K. L., Mokhachane, M. (2023). A cross-sectional study on factors influencing patient participation in undergraduate medical education in a public and private hospital in Johannesburg, South Africa. BMC Medical Education, 23(1), 687. https://doi.org/10.1186/s12909-023-04663-w
- Simons, G., Birch, R., Stocks, J., Insch, E., Rijckborst, R., Neag, G., McColm, H., Romaniuk, L., Wright, C., Phillips, B. E., Jones, S. W., Pratt, A. G., Siebert, S., Raza, K., Falahee, M. (2023). The student patient alliance : Development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students. BMC Rheumatology, 7(1), 36. https://doi.org/10.1186/s41927-023-00359-2
Guillot N., Flora L., Benattar J.-M., Ravot M., Pouillon M., Fauré S., Gasperini F., Rubinstein S., Filali S., Rousselin L., Bouchez T., Pop C., Darmon D. « (2022). « La participation à la réforme du 2ème cycle des études de médecine à travers les ECOS mobilisant des patients formateurs et du Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P) et des étudiants en médecine ». Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp. 43-44.
Flora L., Benattar J.-M., Ravot M., Darmon D. (2022). « Une entité dédiée à la mobilisation des patients au cœur d’une faculté de médecine : Le Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), point d’étape« . Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp. 14-16.
Flora L., Bouchez T., Ravot M., Darmon D. (2022). »L’accompagnement de thèse de médecine générale avec des patients, nouvelle piste pédagogique de partenariat de soin avec le patient« . Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp.45-46.
Flora L., Benattar J.-M., Darmon D., (2022). « La participation des patients formateurs au Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P) en temps de covid-19« . Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp. 47-48.
Carrara P., Garcia J., Frangos E., Wiesner Conti J. (2022). Enseigner le partenariat en simulation : retour d’expérience sur la rédaction conjointe d’un scénario. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p. 32.
Bondu C., Michelet E., Allory E., Berkesse A., Brochard S., Garlantezec R., Jarno P., Lambrech P., Pico- Philippe I., Pons C., Saliou P., Tourniaire N. (2022). Place et rôles du patient dans l’organisation de l’enseignement : co construction d’un DIU sur le partenariat patients/professionnels. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p. 40.
Bosson A., Vadcard L., Allenet B. (2022). Intégration du patient partenaire au sein de simulation par jeu de rôle en pharmacie. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p. 49.
Allenet B., Bosson A., Baran N., Merle R., Bardet J.-D. (2022). Apprentissage de l’entretien pharmaceutique en période de COVID : retour d’une expérience à distance avec des Patients Partenaires. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp.53-54.
Maillard V. Hache C. Hache G. (2022).Perception des patients partenaires sur l’impact de leur implication dans la formation de professionnels de santéLes actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p.55.
Berkesse A., Tourniaire N., Larget A., Jarno P., Dumez V. (2022). « Le partenariat avec les patients dans la formation initiale et continue des
professionnels de la santé : raisons d’agir, types de contribution, degrés et
niveaux d’engagement ». Kinésithér. Scient., n° 644, pp. 33-39
Descôteaux A., Jackson M., Vanier M.-C. (2020). »Quand les patients formateurs prennent le relais : transfert d’ateliers sur la collaboration interprofessionnelle en ligne en temps de COVID-19« . Pédagogie médicale. N°. 21, pp. 215-217.
Flora L., Karazivan P., Dumais-Lévesque A., Berkesse A., Dumez V., Janvier A., Gagnon R., Payot A. (2020). « Impliquer des patients dans la révision du curriculum en médecine : une étude mixte sur l’intégration d’une perspective d’éthique clinique.« , Pédagogie médicale, pp. 65-74.
Jackson M., Descôteaux A., Nicaise L., Flora L., Berkesse A., Codsi M.-P., Karazivan P., Dumez V.,Deschênes M.-F., Charlin B. (2020). « Former en ligne au recrutement de patients partenaires : l’apport des formations par concordance« . Pédagogie Médicale,
https://doi.org/10.1051/pmed/2020035
Jackson M., Descoteaux A. (2020). « Covid-19 et éducation médicale: le rôle d’enseignant des patients évolue en ligne« , BMJ Opinion blog, 21, July.
Raynault A., Lebel P., Brault I., Vanier M.-C., Flora L. (2020). « How interprofessional teams of students mobilized collaborative practice competencies and the patient partnership approach in a hybrid IPE course « . The Journal of Interprofessional Care. To link to this article: https://doi.org/10.1080/13561820.2020.1783217
Raynault A. (2020). Apprendre à collaborer en équipe interprofessionnelle et à développer les compétences de la pratique collaborative et de partenariat patient en santé et services sociaux dans un cours universitaire hybride à l’ère du numérique. Thèse de doctorat, Université de Montréal, Montréal, Québec.
Berkesse A., Karazivan P., Dumez V. (2020). « Le déploiement du partenariat avec les patients dans la formation initiale des professionnels de la santé : réflexions et pistes d’action à partir de l’expérience de la faculté de médecine de l’Université de Montréal ». in La revue sur le partenariat de soin avec le patient : Analyses, N°1, le centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université Côte d’Azur, pp. 6-29.
Berkesse A. (2019). « La culture et les pratiques de partenariat dans les soins : Expériences pédagogiques et stratégies de transformation organisationnelle pour la formation initiale et continue des professionnels de la santé OU re-politiser les enjeux pédagogiques dans les facultés de sciences de la santé », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 21-32.
Vanier M.-C., Flora L., Lebel P., (2016). « Un professionnel de santé qui exerce une pratique collaborative en partenariat avec le patient », in (Dir. Pelaccia T.) Comment [mieux] former et évaluer les étudiants en médecine et en sciences de la santé, Bruxelles, De Boeck, pp.74-104.
Flora L., Berkesse A., Payot A., Dumez V., Karazivan P. (2016), « L’application d’un modèle intégré de partenariat patient dans la formation des professionnels de la santé : vers un nouveau paradigme humaniste et éthique de co-construction des savoirs en santé », Le Journal International de Bioéthique et d’éthique des sciences, volume 27, N° 1, pp. 59-72.
Dumez V. (2015), « La participation du patent à la formation médicale à l’Université de Montréal », Santé en devenir : relever la performance du système de santé, Institut d’analyse stratégique et d’innovation, centre universitaire de santé Mc Gill, pp.22-23.
Goulet M.-H., Larue C., Chouinard C. (2015). « Partage du savoir expérientiel : regard sur la contribution des patients partenaires d’enseignement en sciences infirmières ». Santé mentale au Québec, Vol. XL, N°1, Printemps 2015, pp. 53-66
Vanier M.-C., Flora L., Dumez V. (2014), « Dal Paziente “esperto” al “paziente Formatore : l’esempio dell’Università di Montreal », in (Dir. M.-S. Padula, G. Aggazzotti), Manuale per il docente di medicina generale : comme insegnare la medicina generale nelle cure primarie, Facoltà di Medicina e Chirurgia di Modena, Italia, pp. 149-168.
Brault I., Kilpatrick K., D’Amour D., et al. (2014). « Role Clarification Processes for Better Integration of Nurse Practitioners into Primary Healthcare Teams: A Multiple-Case Study », Nursing Research and Practice, vol. 2014, Article ID 170514, doi:10.1155/2014/170514.
Vanier MC, Dumez V, Drouin E, Brault I, MacDonald SA, Boucher A, Fernandez N, Levert MJ et al (2014).. Partners in Interprofessional Education: Integrating Patients-as-Trainers. Dans: Fulmer, T & Gaines, M. Partnering with Patients, Families, and Communities to Link Interprofessional Practice and Education. Proceedings of a conference sponsored by the Josiah Macy Jr. Foundation in April 2014; New York: Josiah Macy Jr. Foundation; 2014, pp 73-84.
Vanier MC, Therriault PY, Lebel P, Nolin F, Lefebvre H, Brault I, Drouin E, Fernandez N et coll. (2013), “Innovating in Teaching of Collaborative Practice with a Large Student Cohort at Université de Montréal”, J Allied Health, Winter 2013; N°42; Vol.4; pp.97E-106E.
Dumez Vincent (2014). « La perspective du « patient- partenaire » : une nécessité pour le futur en éducation des sciences de la santé » (Postface), dans : Florence Parent éd., Penser la formation des professionnels de la santé. Louvain-la-Neuve, De Boeck Supérieur, « Pédagogies en développement », 2013, p.p. 363-366. DOI : 10.3917/dbu.paren.2013.01.0363.
Cegala D. J. (2003) « Patient communication skills training: a review with implications for cancer patients« . Patient Education Counseling. 2003 May;50(1): pp.91-94.
Le partenariat de soin avec les patients en milieux de soins
Otaka, Y., Harada, Y., Olson, A., Aoki, T., Shimizu, T. (2024). Lessons in clinical reasoning—Pitfalls, myths, and pearls : A case of persistent dysphagia and patient partnership. Diagnosis (Berlin, Germany), 11(4), 450‑454. https://doi.org/10.1515/dx-2024-0061
Huon J.-F., Janoly-Dumenil A., Lehmann A., Dory A., Conort O., Laroussi-Libeault L., Coussement Y., Ruspini E., Vitale E., Hoegy D., Roux-Marson C., Hache G., Allenet B. avec la participation du Conseil d’Administration et du Conseil Scientifique de la SFPC (2024). De la prise de décision partagée au travail en interprofessionnalité et en partenariat avec le patient : quelle(s) implication(s) pour les pharmaciens ? Le pharmacien clinicien, Le 08/11/2024 : https://doi.org/10.1016/j.phacli.2024.09.003
Pomey, M.-P., Schaad, B., Lasserre-Moutet, A., Böhme, P., Jackson, M. (2024). Towards a New Integrated Model for Taking Into Account the Experiential Knowledge of People With Chronic Diseases, Integrating Mediation, Therapeutic Education and Partnership : The Expanded Chronic Care Patient-Professional Partnership Model. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(5), e70054. https://doi.org/10.1111/hex.70054
- Boivin A., Dumez V., Shore F., Bok A. (2024). World leaders unite to embed social participation in health systems Let’s amplify people’s voices by connecting grassroots to the tree tops. BMJ: first published as 10.1136/bmj.q1460
- Otaka, Y., Harada, Y., Olson, A., Aoki, T., Shimizu, T. (2024). Lessons in clinical reasoning—Pitfalls, myths, and pearls : A case of persistent dysphagia and patient partnership. Diagnosis (Berlin, Germany). https://doi.org/10.1515/dx-2024-0061
- Deslauriers T., Gaboury I., Jackson M., Vachon B. (2024) Implementing the patient partnership approach to quality improvement of care and services: A multiple case study protocol. PLoS ONE 19(7): https://doi.org/10.1371/journal.pone.0307160
- Baudot, A., Collange, F., Verot, É. (2024). Mobilisation par des IPA d’un modèle de soin portant sur le partenariat patient . Soins; la revue de référence infirmière, 69(886), 49‑52. https://doi.org/10.1016/j.soin.2024.04.015
- De Jesus, A., Faveur, A., Garnier, L., Servant, C., Le Bars, S., Cousin, G., Dagorne, P., De La Rocque, F., Delgrange, S., Guidy, C., Manighetti, J., Roux, R., Sazy, T., Scull, I., Terrade, C., Turkel, L., Veret, F., Escudier, B., Billard, C., Rieutord A.., Blot, F. (2024). Partenariat patient dans un centre de lutte contre le cancer : mise en place et rôles d’un comité de patients et aidants. Bulletin du cancer, 111(6),576‑586. https://doi.org/10.1016/j.bulcan.2024.02.010
- Pomey, M. P., Wong, C., Berkesse, A., Jackson, M., Descôteaux, A., Karazivan, P., Boivin, A., Rouly, G., Clovin, T., Dumez, V., L’Espérance, A. (2024). Le modèle de Montréal, quelle mise en oeuvre depuis 2015? Gestions hospitalières, 633, 78‑83.
- Cameron, D., Wilson, A., Mendham, A. E., Wingard, S., Kropinyeri, R., Scriven, T., Kerrigan, C., Spaeth, B., Stranks, S., Kaambwa, B., Ullah, S., Worley, P., Ryder, C. (2024). Knowledge interface co-design of a diabetes and metabolic syndrome initiative with and for Aboriginal people living on Ngarrindjeri country. Public Health in Practice (Oxford, England), 7, 100496. https://doi.org/10.1016/j.puhip.2024.100496
- Turuba, R., Katan, C., Marchand, K., Brasset, C., Ewert, A., Tallon, C., Fairbank, J., Mathias, S., Barbic, S. (2024). Weaving community-based participatory research and co-design to improve opioid use treatments and services for youth, caregivers, and service providers. PloS One, 19(4), e0297532. https://doi.org/10.1371/journal.pone.0297532
- Xiao, Y., Fulda, K. G., Young, R. A., Hendrix, Z. N., Daniel, K. M., Chen, K. Y., Zhou, Y., Roye, J. L., Kosmari, L., Wilson, J., Espinoza, A. M., Sutcliffe, K. M., Pitts, S. I., Arbaje, A. I., Chui, M. A., Blair, S., Sloan, D., Jackson, M., Gurses, A. P. (2024). Patient Partnership Tools to Support Medication Safety in Community-Dwelling Older Adults : Protocol f
- Sales, J., Normandin, L., Pomey, M.-P. (2024). Care and services partnership in Quebec birthing centres : Myth or reality? BMC Pregnancy and Childbirth, 24(117), 10. https://doi.org/10.1186/s12884-024-06362-w
- Ruskin, D., Szczech, K., Tyrrell, J., Isaac, L. (2024). Innovative Program to Prevent Pediatric Chronic Postsurgical Pain : Patient Partner Feedback on Intervention Development. Healthcare (Basel, Switzerland), 12(3). https://doi.org/10.3390/healthcare12030360
- Pomey, M.-P., Paquette, J., Nelea, M. I., Vialaron, C., Mourad, R., Bouchard, K., Normandin, L., Côté, M.-A., Desforges, M., Pomey-Carpentier, P., Fortin, I., Ganache, I., Régis, C., Rosberger, Z., Charpentier, D., Vachon, M.-F., Bélanger, L., Dorval, M., Ghadiri, D. P., Lavoie-Tremblay M., Boivin A., Pelletier J.-F., Danino A. M., de Guise, M. (2024). Integrating accompanying patients into clinical oncology teams : Limiting and facilitating factors. BMC Health Services Research, 24(1), 150. https://doi.org/10.1186/s12913-024-10624-w
- Anhorn P. (2023). Le partenariat de soins : enjeux et perspectives pour les systèmes de santé. in L’expérience dans l’innovation en santé modes éphémères ou nouveau paradigme ? (dir. Flora, Grenier Ponsignon): London: Iste, pp. 277-296.
- Frippiat, J., Druppel, M., Tenoutasse, S., Messaaoui, A., Hajselova, L. Lambotte, I. (2023). Ateliers de groupe en diabétologie pédiatrique : quand le patient devient partenaire. Cahiers de psychologie clinique, 61, 217-233. https://doi.org/10.3917/cpc.061.0217
- Larget A., Tournaire N., Ragain-Gire F., L’Espérence A., Allory E., Jarno P., Berkesse A. (2023). Le déploiement du partenariat en santé en France. Soins cadres – no 144 – juin 2023, pp. 21-27
- Sagnol, G., Haesebaert, J., Termoz, A., Michel, P., Schott, A.-M., Potinet, V., Pomey, M.-P., Tazarourte, K., Douplat, M. (2023). Assessing patient partnership among emergency departments in France : A cross-sectional study. BMC Health Services Research, 23(1), 897. https://doi.org/10.1186/s12913-023-09905-7
Huteau, M.-E., Cardoso-Fortes, C., Berkesse, A., Jackson, M., Pomey, M.-P., Stoebner-Delbarre, A. (2023). Les professionnels de santé s’appuient sur les patients partenaires. EM-Consulte, 32 (
Pomey M.-P., Paquette J., Iliescu‐Nelea M., Vialaron C., Mourad R., Bouchard K., Normandin L.,PhD, Côté M.-A., Desforges M., Pomey‐Carpentier P., Fortin I., Ganache I., Régis C., Rosberger Z., Charpentier D., Bélanger L., Dorval M., Ghadiri D. P., Lavoie‐Tremblay M., Boivin A., Pelletier J.-F., Fernandez N., Danino A. M., de Guise M. (2023). Accompanying patients in clinical oncology teams: Reported activities and perceived effects. Health Expectations. 2023;1–11. DOI: 10.1111/hex.13710
Sergent L. (2023). Patient pantin ou partenaire : une étude de la participation à l’hôpital pendant la crise Covid. Connexions, n° 118, pp.81-93
Vialaron C., Normandin L., Grenier A.-D., Pomey M.-P. (2022). L’apport d’une communauté de pratique en temps de crise: le cas du Québec et du partenariat de soins et de services avec les patients. Risques & qualité, VOL. XIX – N° 3, pp. 155-161
Michel P., Dadon I., Thual G., Baumlin-Leyi C., Volta-Paulet B., Haesebaert J., Berkesse A. (2022). Les voies/voix plurielles pour développer le « partenariat patient » et l’« expérience patient » aux Hospices civils de Lyon: une démarche stratégique, intégrée et modélisante. Risques & qualité, VOL. XIX, N° 4, pp. 205 -216
Zerdoug M. (2022). Développement des pratiques de partenariat avec les patients au sein d’un service de diabétologie hospitalier. Journal de Droit de la Santé et de l’Assurance Maladie, N° 35. hal-03988984
Saint-Jean M., Aussel L. (2022). L’évolution de la posture des patients partenaires – analyse d’un pouvoir en partage. Perspective soignante, n° 74. ⟨hal-03934181⟩
Böhme P., Echarif F., Voyen M., Nguyen-Thi P. L., Ziegler O. (2022).
« Développer le partenariat patient-professionnel de santé à partir de l’éducation thérapeutique« . Santé Publique, HS, n°34, p.15 A: https://doi.org/10.3917/spub.220.0015a
Trépanier E., Pomey M.-P., Lebel P. (2021). « Patient engagement in an academic community-based primary care practice’s management committee: A case study« . Patient Experience Journal (PXJ), Volume 8,
Issue 3, pp. 153-161.
Bourmaud, A., Piot de Villars, E., Renault-Teissier, E. (2021). Patient partenaire et éducation thérapeutique en cancerologie. Bulletin du Cancer. https://doi.org/10.1016/j.bulcan.2021.09.016
Sayani, A., Maybee, A., Manthorne, J., Nicholson, E., Bloch, G., Parsons, J. A., Lofters, S. W. H. and al. (2021). Building Equitable Patient Partnerships during the COVID-19 Pandemic : Challenges and Key Considerations for Research and Policy. Healthcare Policy, 17(1).
Kemper, S., Bongers, M., Slok, E., Schoonmade, L. J., Kupper, J., & Timen, A. (2021). Patient and public engagement in decision-making regarding infectious disease outbreak management : An integrative review. BMJ Global Health, 6(11). https://doi.org/10.1136/bmjgh-2021-007340
Shaw, J., Chandra, P. S. and S. (2021). Commentary : Community Knowledge for Equity in Healthcare. Healthcare Policy, 17(1).
Pomey M.-P., Clavel N., Normandin L. Del Grande C., Ghadiri D. P., Fernandez-McAuley I., Boivin A., Flora L., Janvier A., Karazivan P., Pelletier J.-F., Fernandez N., Paquette J. Dumez V. (2021) « Assessing and promoting partnership between patients and healthcare professionals : co-construction of the CADICEE tool for patients and their relatives » Health Expectations. Vol. 24, Issue 4, pp.1230-1241
Gagliardi, AR, Martinez, JPD, Baker, GR et al. (2021). « Hospital capacity for patient engagement in planning and improving health services: a cross-sectional survey« . BMC Health Serv Res. 21, 179 (2021). https://doi.org/10.1186/s12913-021-06174-0
Cobey K., Monfaredi Z., Poole E., Proulx L., Fergusson D., Moher D. (2021) Does the ICMJE guideline for authorship need revising to support and recognize patient partnership? A cross-sectional survey of journal editor-in chief. Medical journal.
Pomey M.-P., De Guise M., Desforges M., Bouchard K., Viallaron C., Normandin L., Illiescu-Nelea M. Fortin I., Ganache I., Régis C., Rosberger Z., Charpentier DD., Bélanger L., Dorval M., Ghadiri D. P., Lavoie-Tremblay M. Boivin A., Pelletier J.-F., Fernandez N. Danino A.-M. (2021). « The patient advisor, an organizational resource as a lever for an enhanced oncology patient experience (PAROLE-onco): a longitudinal multiple case study protocol« . BMC, 4/01/2021, Serv Res 21, 10 (2021).
Scholtes B., Breinbauer M., Rinnenburger M., Voyen M., Nguyen-Thi L.P., Ziegler O., Germain L., Böhme P., Baumann M., Le Bihan E., Repplinger J.-J, Spitz E. , Voz B. , Ortiz-Halabi I. , Dardenne N. , Donneau A.-F. , Guillaume M., Bragard I., Pétré B. (2020). Hospital practices for the implementation of patient partnership in a multi-national European region. European Journal of Public, ckaa153 , https://doi.org/10.1093/eurpub/ckaa153
Publish the, september 24
Rivest J., Desbaumes Jodoin V., Leboeuf I., Folch N., T.Martineau J., Beaudet-Hillman G., Tremblay C. (2020). « Engaging patients as partners in cancer care: An innovative strategy to implement screening for distress?« . Canadian Oncology Nursing Journal, Vol 30, n ° 3, 07/2020, pp. 180-185
Rivest J., Desbaumes Jodoin V., Leboeuf I., Folch N., T.Martineau J., Beaudet-Hillman G., Tremblay C. (2020). « Les patients-partenaires dans les soins du cancer : Une stratégie novatrice dans le dépistage de la détresse?« . Revue Canadienne de soins infirmiers en oncologie, Vol 30, n ° 3, 07/2020, pp. 186-192
Boivon A. Rouly G. (2020).« Community initiative co-led with patients could improve care for people with complex health and social needs ». BMJ. (Partnership in Practice). February 28.
Anhorn P., Chinet M., Devaux L., Reber R., Nicolas F. (2020). « Le Projet de soins anticipé : Un premier pas du réseau vers le partenariat entre patients et professionnels de la santé ». La revue sur le partenariat de soin avec le patient : Analyses, N°1, le centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université Côte d’Azur, pp. 49-72.
Morkani S., Nguyen-Thi P.-L., Voyen M., Thouveneau S., Perrin O. (2020). Le partenariat patient, un modèle innovant ». gestions hospitalières, janvier 2020, n° 592, pp. 58-61.
Mokrani S., Marie-Langlet M-F., Lavoie C., Mercier A.-M., Olivier I., Simard I., » La semaine de la sécurité des patients : quelles expériences innovantes d’engagements des patients au Québec ?« . Risques & Qualité • 2020 – VOLUME XVII – N° 1, pp. 1-5.
Clavel, N., Pomey, M. & Ghadiri, D.P.(2019). Partnering with patients in quality improvement: towards renewed practices for healthcare organization managers? BMC Health Serv Res19, 815 (2019) doi:10.1186/s12913-019-4618-8
Camilien, M., Simard, I., Tétreault, B., Pomey, M-P. (2019). Le Partenariat de soins et services avec les usagers au CISSS de Laval : qualité ou performance ? Le Point en santé et services sociaux éducation, volume 14, no. 3, hiver 2019.
Néron, A., Lecocq, D., Laloux, M. (2019). « Le partenariat patient : une pratique collaborative innovante incluant le patient partenaire ». Santé conjuguée, N° 88, pp. 14-18.
Pomey M.-P., Efanov J.-I., Arsenault J., Mercier A.-M., Lahaie V., Fortin O., Haineault M., Danino A.-M., (2018). The Partnership Co-Design Lab: Co-constructing a Patient Advisor Programme to increase adherence to rehabilitation after upper extremity replantation. JHD. 3 (1), pp.94-101
Touveneau S., Benichou A., Geissbuhler A., Merkli S. (2018). « Démarche relationnelle du partenariat entre patients et professionnels: conception et implémentation ». Revue Médicale Suisse, N° 14, pp. 1533-1537.
Schaad B. , Bourquin C. , Panese F., Stiefel F., (2017). « Patients : sujets avant d’être partenaires ». Revue Médicale Suisse, 13 : 1213-6
Karazivan P., Dumez V., Flora L., Jouet E., Las Vergnas O., Del Grande C., Pomey M.-P., Guadiri S., Fernandez N., Lebel P. (2015), « The Patient as Partner in Care: Conceptual Grounds for a Necessary Transition », Academic médicine, (Canada), April 2015 – Volume 90 – Issue 4 ; pp.437–441.
Flora L., Lebel P., Dumez V., Bell C., Lamoureux J., Saint-Laurent D. (2015). « L’expérimentation du Programme partenaires de soins en psychiatrie : le modèle de Montréal ». Santé mentale au Québec, Vol. XL, N°1, Printemps 2015, pp. 101-118
Lierville A.-L., Grou C, Pelletier J.-F. (2015). « Enjeux éthiques potentiels liés au partenariats patients en psychiatrie: état de situation à l’institut universitaire en santé mentale de Montréal ». Santé mentale au Québec, Vol. XL, N°1, Printemps 2015, pp. 119-134
Pomey M.-P., Flora L., Ghadiri Djahanchah S., Karazivan P. (2015). « Engagement des patients : approches théoriques et expériences pratiques. », Revue du CREMIS, printemps 2015, Vol. 8, N°1, pp.10-18
Pomey M.P-P., Dumez V., Boivin A., Hihab H., Lebel P. (2015), « Le partenariat de soins et de services : une voix/voie pour donner un sens à la Loi 10 ? », Le Point en santé et services sociaux, Vol. 11, no 1, pp. 38-42.
DCPP (2015), Déploiement du partenariat avec les patients dans une démarche d’amélioration continue des soins et des services de la santé en approche d’optimisation des processus (Lean Santé) phase II, Direction collaboration et partenariat patient, Faculté de médecine, Université de Montréal.
Pomey M.-P., Ghadiri D. P., Karazivan P., Fernandez N., Clavet N. (2015), « Patients as partners : a qualitative study of patients engagement in their health care : patients as Partner in their health care », Plos one, PLOS ONE | DOI:10.1371/journal.pone.0122499 April 9, 2015.
Pomey MP, Hihat H, Néron, A, Khalifa M, Dumez V, Lebel P (2015), « Patient partnership in quality imrovement of healthcare services : patients’ input and challenges faced », Patient Experience Journal, Vol. 2, Issue 1, Spring 2015, pp. 29-42.
DCPP, 2015, Guide pratique : recrutement des patients partenaires, Direction collaboration et partenariat patient, Faculté de médecine, Université de Montréal.
DCPP, 2015, Guide pratique : guide du patient coach, Direction collaboration et partenariat patient, Faculté de médecine, Université de Montréal.
DCPP, 2015, Référentiel de compétences et fonctions du tandem Collaboration et Partenariat Patient, Direction collaboration et partenariat patient, Faculté de médecine, Université de Montréal.
DCPP, 2015, Guide d’entrevue pour le recrutement des Leaders de collaboration en établissement, Direction collaboration et partenariat patient du centre de pédagogie appliquée aux sciences de la santé, Faculté de médecine, Université de Montréal.
DCPP, 2014, Guide pratique des Leaders de collaboration en établissement, Direction collaboration et partenariat patient du centre de pédagogie appliquée aux sciences de la santé, Faculté de médecine, Université de Montréal.
Morency S. (2014). Le patient partenaire. Québec : Ministère de la Santé et des Services sociaux. Direction de la planification et des orientations stratégiques, mai 2014
Deschênes, B., Jean-Baptiste, A., Matthieu, E., Mercier, A-M., Roberge, C., & St- Onge, M. (2014). « Le Guide d’implantation du partenariat de soins et de services : Vers une pratique collaborative optimale entre intervenants« . Réseau universitaire intégré de santé et de services sociaux de l’Université de Montréal.
Lebel P., Flora L., Dumez V., Berkesse A., Néron A., Débarges B., Trempe-Martineau J. (2014), « Le partenariat en santé : pour mieux répondre aux besoins des personnes âgées et de leurs proches aidants par la co-construction. », Vie et Vieillissement, vol. 12, no 11, novembre 2014, pp. 15-20.
Karazivan P. (2014), « Le virage patient-partenaire et les résistances d’une profession en mutation: regard d’un médecin de famille », in (Coord. : Las Vergnas O., Jouet E. Noel-Hureaux E.), Nouvelles interventions réflexives dans la recherche en santé : du savoir expérientiel des malades aux interventions des professionnels de santé, Paris, Archives contemporaines, pp. 25-30.
Karazivan P., Flora L., Dumez V. (2014), « Savoirs expérientiel et sciences de la santé : des champs à défricher », Revue du CREMIS, printemps 2014, Vol 7. N°1, pp. 29-33.
RUISUM, Réseau Universitaire Integré en Santé de l’université de Montréal, Comité sur les pratiques collaboratives et la formation interprofessionnelle (2013). Guide d’implantation du partenariat de soins et de services. Vers une pratique collaborative optimale entre intervenants et avec le patient. Réseau universitaire intégré de santé de l’Université de Montréal. Mai 2013.
Dumez V., Gaulin D., Lebel P., (2013), « Le patient, un acteur clé du partenariat de soins et de services : réalité en émergence ? », Le partenaire, AQRQ, pp. Vol 22 ; N° 2, Automne 2013, pp. 28-31.
Karazivan, P., Dumez, V. et P. Lebel (2011). « Le patient partenaire de soins: un atout pour le médecin! », Le point en administration de la santé et des services sociaux, N° 7, pp. 6-8.
Bibliographie sur le partenariat de soin avec les patients dans la recherche
Burel L. (2024). Le tandem de partenariat médecin généraliste-patient partenaire : une expérience transformatrice. Thèse d’exercice de médecine. Université côte d’azur.
Richards DP, Poirier S, Mohabir V, Proulx L, Robins S, Smith J. Reflections on patient engagement by patient partners: how it can go wrong. Res Involv Engagem. 2023 Jun 12;9(1):41. doi: 10.1186/s40900-023-00454-1. PMID: 37308922; PMCID: PMC10262483.
Dumez, V., L’Espérance, A. (2024). Beyond experiential knowledge: a classification of patient knowledge. Soc Theory Health (2024). https://doi.org/10.1057/s41285-024-00208-3
Côté, C.I. (2024). A critical and systematic literature review of epistemic justice applied to healthcare: recommendations for a patient partnership approach. Med Health Care and Philos. https://doi.org/10.1007/s11019-024-10210-1
Montiel C, Jackson M, Clovin T, Bogdanova E, Côté C, Descoteaux A, Wong C, Dumez V, Pomey MP, Hanna D. (2024). Patient Learning Pathway: Identifying Patient Competencies in Teledermatology for Effective Management of Dermatological Conditions. J Cutan Med Surg. 2024 Mar 19:12034754241238716.
Marshall, D.A., Suryaprakash, N., Lavallee, D.C. McCarron T. L., Zelinsky S., Barker K. L., MacKaean G., Santana M. J., Moayyedi P., Bryan S. (2024). Studying How Patient Engagement Influences Research: A Mixed Methods Study. Patient. https://doi.org/10.1007/s40271-024-00685-8
`Dhamanaskar R, Tripp L, Vanstone M, Canfield C, Levasseur MA, Abelson J. (2024). Patient partner perspectives on compensation: Insights from the Canadian Patient Partner Survey. Health Expect. Jan 15;27(1):e13971. doi: 10.1111/hex.13971.
Scholz B., Kirk L., Warner T., O’Brien L. , Kecskes Z., Mitchell I. (2024) From a Single Voice to Diversity: Reframing ‘Representation’ in Patient Engagement. Qualitative Health Research, doi/pdf/10.1177/10497323231221674
Chudyk A. M., Stoddard R., McCleary N., Duhamel T. A., Shimmin C., Hickes S., Schultz A. & pancanadian conselors group patients and public (2023). Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study Research Involvement Engagement 9 , 106 (2023). https://doi.org/10.1186/s40900-023-00511-9
Kemper, S., Bongers, M., Kupper, F., De Vries, M., Timen, A. (2023). Preferences for public engagement in decision-making regarding four COVID-19 non-pharmaceutical interventions in the Netherlands : A survey study. PloS One, 18(10), e0292119. https://doi.org/10.
Pogorzelski D., Wells J. L.J., Marvel D.; Palmer J., Mullins C. D., Medeiros M., Gallant J. L., Spicer E., Bergin P., Gitajn, I. L., Mullin D. S., Gaski G., Hymes R., Bzovsky S., Slobogean G. P., Sprague S. and the PREP-IT Investigators. (2023). Pragmatic design and inclusion of patient–partner representatives improves participant experience in clinical research. OTA International: The Open Access Journal of Orthopaedic Trauma 6(4):, December 2023. | DOI: 10.1097/OI9.0000000000000287
Jackson M., Clovin T., Montiel C., Bogdanova E., Côté C., Descoteaux A., Wong C., Dumez V., Pomey M.-P (2023). Adopting a learning pathway approach to patient partnership in telehealth: A proof of concept. journal Preproof: https://doi.org/10.1016/j.pecinn.2023.100223
Aas N. S., Borg Distefano M. , Pettersen I. , Gravrok B. , Nordvol L. Y. , Fauskanger Bjaastad J. Grimsgaard S. (2023).Patient and public involvement in health research in Norway: a survey among researchers and patient organisations . Research Involvement and Engagement (2023) 9:48 https://doi.org/10.1186/s40900-023-00458-x
Hawkes, R. E., Sanders, C., Soiland-Reyes, C., Brunton, L., Howells, K., Cotterill, S., Bennett, C., Lowndes, E., Mistry, M., Wallworth, H., Bower, P. (2023). Reflections of patient and public involvement from a commissioned research project evaluating a nationally implemented NHS programme focused on diabetes prevention. Research Involvement and Engagement, 9(1), 42. https://doi.org/10.1186/
Richards, D. P., Poirier, S., Mohabir, V., Proulx, L., Robins, S., Smith, J. (2023). Reflections on patient engagement by patient partners : How it can go wrong. Research Involvement and Engagement, 9(1), 41. https://doi.org/10.1186/
Hatfield D. (2023). Conceptualising patient and public engagement and involvement (PPEI) for commissioning and designing health and care services as situated learning. Brighton University. DOI : https://doi.org/10.17033/DATA.00000303
Nielssen, I., Ahmed, S., Zelinsky, S., Dompe, B., Fairie, P., Santana, M. J. (2023). Co-building a training programme to facilitate patient, family and community partnership on research grants : A patient-oriented research project. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.
- Riches, L., Ridgway, L., Edwards, L. (2023). Co-learning commentary : A patient partner perspective in mental health care research. Research Involvement and Engagement, 9(1), 24. https://doi.org/10.1186/
s40900-023-00435-4
- Yous, M.-L., Ganann, R., Ploeg, J., Markle-Reid, M., Northwood, M., Fisher, K., Valaitis, R., Chambers, T., Montelpare, W., Légaré, F., Beleno, R., Gaudet, G., Giacometti, L., Levely, D., Lindsay, C., Morrison, A., Tang, F. (2023). Older adults’ experiences and perceived impacts of the Aging, Community and Health Research Unit-Community Partnership Program (ACHRU-CPP) for diabetes self-management in Canada : A qualitative descriptive study. BMJ Open, 13(4), e068694. https://doi.org/10.
1136/bmjopen-2022-068694
Agyei-Manu, E., Atkins, N., Lee, B., Rostron, J., Dozier, M., Smith, M., McQuillan, R. (2023). The benefits, challenges, and best practice for patient and public involvement in evidence synthesis : A systematic review and thematic synthesis. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.
Bisson, M., Aubrey-Bassler, K., Chouinard, M.-C., Doucet, S., Ramsden, V. R., Dumont-Samson, O., Howse, D., Lambert, M., Schwarz, C., Luke, A., Rabbitskin, N., Gaudreau, A., Porter, J., Rubenstein, D., Taylor, J., Warren, M., & Hudon, C. (2023). Patient engagement in health implementation research : A logic model. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.
Burgher, T., Shepherd, V., Nollett, C. (2023). Effective approaches to public involvement in care home research : A systematic review and narrative synthesis. Research Involvement and Engagement, 9(1), 38. https://doi.org/10.1186/
Campbell, C. I., Chen, C.-H., Adams, S. R., Asyyed, A., Athale, N. R., Does, M. B., Hassanpour, S., Hichborn, E., Jackson-Morris, M., Jacobson, N. C., Jones, H. K., Kotz, D., Lambert-Harris, C. A., Li, Z., McLeman, B., Mishra, V., Stanger, C., Subramaniam, G., Wu, W., … Marsch, L. A. (2023). Patient Engagement in a Multimodal Digital Phenotyping Study of Opioid Use Disorder. Journal of Medical Internet Research, 25, e45556. https://doi.org/10.
Colomer-Lahiguera, S., Steimer, M., Ellis, U., Eicher, M., Tompson, M., Corbière, T., Haase, K. R. (2023). Patient and public involvement in cancer research : A scoping review. Cancer Medicine. https://doi.org/10.
Frith, L. (2023). Democratic Justifications for Patient Public Involvement and Engagement in Health Research : An Exploration of the Theoretical Debates and Practical Challenges. The Journal of Medicine and Philosophy, 48(4), 400‑412. https://doi.org/10.
Hinton, E. C., Fenwick, C., Hall, M., Bell, M., Hamilton-Shield, J. P., & Gibson, A. (2023). Evaluating the benefit of early patient and public involvement for product development and testing with small companies. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 26(3), 1159‑1169. https://doi.org/10.
Husson, M., Dechartres, A., Ramdjee, B., Diverres, M., Zejli, T., L’henaff, M., Jehanno, E., Tubach, F., Caille, A. (2023). Patient and public involvement is suboptimal in randomized controlled trials addressing a chronic condition. Journal of Clinical Epidemiology, S0895-4356(23)00159-2. https:/
Karlsson, A. W., Kragh-Sørensen, A., Børgesen, K., Behrens, K. E., Andersen, T., Kidholm, M. L., Rothmann, M. J., Ketelaar, M., & Janssens, A. (2023). Roles, outcomes, and enablers within research partnerships : A rapid review of the literature on patient and public involvement and engagement in health research. Research Involvement and Engagement, 9(1), 43. https://doi.org/10.1186/
McKenna, V. B., Sixsmith, J., Byrne, N. (2023). Patient public involvement (PPI) in health literacy research : Engagement of adults with literacy needs in the co-creation of a hospital-based health literacy plan. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 26(3), 1213‑1220. https://doi.org/10.
Mojadeddi, Z. M., Öberg, S., Rosenberg, J. (2023). Low degree of patient involvement in contemporary surgical research : A scoping review. Journal of Postgraduate Medicine. https://doi.org/10.
Muir, R., Carlini, J., Crilly, J., Ranse, J. (2023). Patient and public involvement in emergency care research : A scoping review of the literature. Emergency Medicine Journal : EMJ, emermed-2022-212514. https://
Partridge, A., Hitchman, J., Savic, L., Shelton, C. L. (2023). How to plan, do and report patient and public involvement in research. Anaesthesia, 78(6), 779‑783. https://doi.org/10.
Rubin, M. R. (2023). The Role of the Patient Partnership in Designing Research on Neuropsychiatric Issues in Hypoparathyroidism. Journal of the Endocrine Society, 7(7), bvad068. https://doi.org/10.
Tanay, M. A., Diez de Los Rios de la Serna, C., Boland, V., Lopes, A. M. D. S., Wingfield, K., Chircop, D., Dornan, M., Suchodolska, G., Yıldız Aytaç, G., Kurt, B., Colomer-Lahiguera, S. (2023). Patient and public involvement in research : Reflections and experiences of doctoral cancer nurse researchers in Europe. European Journal of Oncology Nursing : The Official Journal of European Oncology Nursing Society, 64, 102351. https://doi.org/10.
Vinnicombe, S., Bianchim, M. S., Noyes, J. (2023). A review of reviews exploring patient and public involvement in population health research and development of tools containing best practice guidance. BMC Public Health, 23(1), 1271. https://doi.org/10.1186/
Weiler-Wichtl, L. J., Leiss, U., Gojo, J., Kienesberger, A., Hansl, R., Hopfgartner, M., Schneider, C. (2023). Good to know—This is PPIE! Development of a training tool for public and patient involvement and engagement in pediatric oncological research. Cancer Reports (Hoboken, N.J.), 6(6), e1835. https://doi.org/10.
Gaschignard M. (2023). «La perception des patients du partenariat-patient dans les pratiques orthophoniques en France». Rééducation Orthophonique. N° 293/294 – mars/juin, pp.367-372.
Fiand-Fontaine E. (2023). «Passer au partenariat patient : en pratique, comment faire ? De la perte de sens à la renaissance : témoignage personnel». Rééducation Orthophonique. N° 293/294 – mars/juin, pp.191-196.
Emerson G. (2023). Évaluation du logiciel ApiAppS, outil d’aide à la prescription mobile de santé . Thèse de médecine générale, faculté de médecine, Université Côte d’Azur.
Elliott, M. J., McCarron, T. L., Schick-Makaroff, K., Getchell, L., Manns, B., Fernandez, N. (2023). The dynamic nature of patient engagement within a Canadian patient-oriented kidney health research network : Perspectives of researchers and patient partners. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13716
Abdou Oumarou M., Las Vergnas O., Messaadi N. (2022). Comment la réflexivité des malades est-elle envisagée par les professionnels de santé dans le cadre de l’accompagnement médical, Le partenariat de soin avec le patient : Analyses, N°5, pp. 9-38
Beer L. (2022). Patient partenaire et transfert dans le soin. Le partenariat de soin avec le patient : Analyses, N°5, pp. 39-44
Prebeg M., Patton M., Desai R., Smith M., Krause K., Butcher N., Monga S. (2022). From participants to partners: reconceptualising authentic patient engagement roles in youth mental health research. The Lancet Psychiatry online 13 December :https://doi.org/10.1016/S2215-0366(22)00428-X
Van Eeghen C., Hitt J. R., Pomeroy D. J., Reynolds P., Rose G. L., O’Rourke Lavoie J. (2022). Co-creating the Patient Partner Guide by a Multiple Chronic Conditions Team of Patients, Clinicians, and Researchers : Observational Report. Journal of General Internal Medicine, 37(Suppl 1), 73‑79. https://doi.org/10.1007/s11606-021-07308-0
Zannad, F., Chauhan, C., Gee, P. O., Hartshorne-Evans, N., Hernandez, A. F., Mann, M. K., Martinez, R., Mehran, R. (2022). Patient partnership in cardiovascular clinical trials. European Heart Journal, 43(14), 1432‑1437. https://doi.org/10.1093/eurheartj/ehab835
Werba I., Brejon-Lamartinière N. (2021). « Le partenariat-patient dans la pratique orthophonique en France : état des lieux et perspectives », Glossa, n° 130, pp. 58-77
Bonardi C., Karcher B., Collazzo G., Barbaroux A., Balez E., Faure S., Halloy A., Flora L. (2021). « Partenariat avec les patients : les leçons d’une pandémie », Neuropsychologie, 13 (2), pp. 116-120.
Codsi M.-P., Karazivan P., Rouly G., Leclaire M., Boivin A. (2021). « Changing relationships: how does patient involvement transform professional identity? An ethnographic study« , British Medical Journal Open, 2021;11:e045520. doi: 10.1136/bmjopen-2020-045520
Bouabida K., Pomey M.-P., Cyr G., Aho-Glele U., Gomes Chaves B. (2021). « The paradoxical injunctions of partnership in care: Patient engagement and partnership between issues and challenges », Patient Experience Journal : Vol. 8: Iss. 1, article 2. DOI: 10.35680 / 2372-0247.1538
Barchewitz M., Charels M., Flora L., Gueroult-Accolas, L., Honoré S., Allenet .B, Hache G.(2021). »Connaissances et représentations sur le partenariat patient : enquête auprès des pharmaciens. » Le Pharmacien Hospitalier et Clinicien
Pomey M.-P., Bush P. L., Demers-Payette O., L’Espérance A., Lochhead L., Ganache I., Roy D. (2020) « Developing recommendations for the diagnosis and treatment of Lyme disease: the role of the patient’s perspective in a controversial environment« . International Journal of Technology Assessment in Health Care. Publié en ligne par Cambridge University Press: 23 December 2020
Pétré B., Louis G., Voz B., Berkesse A., Flora L.(2020). »Patient partenaire : de la pratique à la recherche. » Santé publique, Vol. 32, N° 4, Juillet-août, pp. 371-374
Codsi M.-P. (2020). Les coulisses du partenariat patient : Comment le partenariat avec les patients change l’identité des professionnels de la santé ? Département de psychopédagogie et d’andragogie. Faculté des sciences de l’éducation / Faculté de médecine, Université de Montréal
Martineau J.-T., Minyaoui A., Boivin A. (2020). « Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice« . BMC Med Ethics 21, 34 https://doi.org/10.1186/s12910-020-0460-0
Flora L. (2019). « Quand l’épreuve singulière de la vie avec la maladie devient processus de transformation d’un système de santé », in Chemins de la formation, Hors série, Vivre la maladie, entre épreuves, récits et histoire, Paris : L’Harmattan, Université de Tours, pp.116-129.
Pétré B. (2019). « Patient partenaire: de la pratique à la recherche. Un regard de santé publique sur les tendances en matière de recherche sur le patient partenaire. », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 312-334.
Ballesteros Gallego F., Martin C., Allard J., Anthony S. J., Dumez V., Hartell D., Hébert M.-J., Knoll F., West J. W, Wright L., Fortin M.-C. (2018). » Defining Future Research Priorities in Donation and Organ and Stem Cell Transplantation With Patients, Families, Caregivers, Healthcare Providers and Researchers Within the Canadian National Transplant Research Program ». Transplantation Direct;4: e360; doi: 10.1097/TXD.0000000000000791
Boivin A., Flora L., Dumez V., L’Espérance A., Berkesse A., Gauvin F.-P. (2017). « Transformer la santé en partenariat avec les patients et le public : historique, approche et impacts du “modèle de Montréal”», In « La participation des patients » « vol. 2017, Paris : Editions Dalloz, pp. 11-24.
Ghadiri D. P. S., Flora L., Pomey M.-P. (2017). « Le virage patient partenaire de soins au Québec. Reconfiguration de l’exercice du pouvoir médical et lutte pour de nouvelles subjectivités« . In « La participation des patients« , Paris : Editions Dalloz, pp. 25-36.
Boivin, A., F.-P. Gauvin, P. Lehoux, I. Marcoux, Néron A, G. Baril and M. Flon (2017). Que doit-on savoir sur l’aide médicale à mourir? Comprendre les besoins d’information et les enjeux du partenariat avec les patients, les proches aidants et les professionnels de la santé, Centre d’excellence sur le partenariat avec les patients et le public: 46.
Boivin, A., V. Dumez, C. Loignon, M.-P. Gagnon, P. L. Bush, I. Ganache, F. Laverdière, M. Fournier, M. Menear, J. Légaré and J. Caron-Malenfant (2015). Soutenir la recherche en partenariat avec les patients et le public: stratégie d’engagement pour l’Unité de SOUTIEN-SRAP Quebec: 22.
Flora L. (2014). « Des patients réflexifs, au potentiel de transformation des systèmes de santé. » dans l’ouvrage Les métiers de la santé face aux industries pharmaceutique, agroalimentaires et chimiques, (Dir. Scheffer P.), Paris : L’harmattan.
Implication des patients en pédagogie de sciences de la santé
Robitaille V., de Carvalho Corôa R., Guay-Bélanger S., Dumas M.-P., Côté M.-N., Filali S., Damon D., Flora L., Carreau E., Légaré F., (2024). Implementation of a community ‘Rallye Ressources’ activity for family medicine students. BMJ Evidence-Based Medicine 2024;29:A104.
McKinlay, E., Burrow, M. Morgan, S. (2024). Cancer Care Pre-registration Interprofessional Education with Expert Patients: A Qualitative Study. J Canc Educ . https://doi.org/10.1007/s13187-024-02540-8
Ashdown, L., Jones, L. (2024). The time for patient partnership in medical educationhas arrived : Critical reflection through autoethnography from a physicianturned patient. Medical Teacher, 46(10), 1322‑1327. https://doi.org/10.1080/0142159X.2024.2308065
Bennett-Weston,A., Bostock, J., Howick, J. (2024). The case for patient involvement inmedical curriculum development. BMJ (Clinical Research Ed.), 386,e080641. https://doi.org/10.1136/bmj-2024-080641
Duncan, E., Agnant, J., Napoli, K., Sagalowsky, S. T. (2024). Development and Implementation of a Family Presence Facilitator Curriculum for Interprofessional Use in Pediatric Medical Resuscitations. MedEdPORTAL : The Journal of Teaching and Learning Resources, 20, 11445. https://doi.org/10.15766/mep_2374-8265.11445
O’Brien, S.,Davenport, C. (2024). Embedding the service user voice to co-produce UK mental health nurse education-A lived experience narrative. Journal of Psychiatric and Mental Health Nursing, 31(5), 769‑775. https://doi.org/10.1111/jpm.13031
Nemir, A., Pearson, M., Kitchin, V., Wilbur, K. (2024). Real Patient Participation in Workplace-Based Assessment of Health Professional Trainees : A Scoping Review. Evaluation & the Health Professions, 47(3), 283‑295.
https://doi.org/10.1177/01632787231180275
Pearson, H., Bell, C., Cox, K., Kayum, C., Knox, L., Gibson, F., Myall, M., Darlington, A.-S., Potter, E., Bird, N. (2024). Integration of patient and public involvement in a doctoral research study using the research cycle. Research Involvement and Engagement, 10(1), 87. https://doi.org/10.1186/s40900-024-00620-z
Pearson, H., Bell, C., Cox, K., Kayum C., Leona Knox L., Gibson F., Myall M., Darlington A.-S., Potter E. Bird N. (2024). Integration of patient and public involvement in a doctoral research study using the research cycle. Res Involv Engagem 10, 87.
Kibler, S. (2024). Initiation to patient partnership in mental health and psychiatry from initial training onwards. Revue de l’infirmiere, 73(301), 41‑44. https://doi.org/10.1016/j.revinf.2024.04.013
Patson, N. D., Wagner, L. (2024). Building a more engaged scientist from the bottom up : The impact of public engagement training on undergraduate students. PloS One, 19(4), e0302671. https://doi.org/10.1371/journal.pone.0302671
Towle, A., Wang, L., Ong, K., Kline, C. C. (2024). Guiding Principles for Patient and Public Engagement in the Educational Missions of Medical Schools. Academic Medicine : Journal of the Association of American Medical Colleges.
Hanson, M. D., Pang, C., Springall, E., Kulasegaram, K., & Eva, K. W. (2024). Patient Engagement in Medical Trainee Selection : A Scoping Review. Academic Medicine : Journal of the Association of American Medical Colleges, 99(1), 98‑105. https://doi.org/10.
Morin A., Couturier Y., Poirier M. D., Vaillancourt V.T., Massé S., Tardif A. D., Poitras M. E.(2023).The impact of patients as trainers on registered nurses’ patient engagement in primary care clinics: a qualitative study. BMC Primary Care (2023) 24:265 : https://doi.org/10.1186/s12875-023-02210-6
O’Neill, J., Docherty Stewart, B., Ng, A., Roy, Y., Yousif, L., McIntyre, K. R. (2023). Medical student attitudes to patient involvement in healthcare decision-making and research. Journal of Medical Ethics, jme-2023-109451. https://doi.org/10.1136/jme-2023-109451
Pierce, M., Foley, L., Kiely, B., Croke, A., Larkin, J., Smith, S. M., Clyne, B., Murphy, E. (2023). Embedding formal and experiential public and patient involvement training in a structured PhD programme : Process and impact evaluation. Research Involvement and Engagement, 9(1), 105. https://doi.org/10.1186/s40900-023-00516-4
Gary J., Hébert P., Maury A., Le Ridant M., Renaut P., Odent L., Figuet L., Allory E. (2023). Changes in French family medicine residents’ perspectives on patient partners’ participation in teaching: a qualitative study in co-facilitated practice exchange groups. Medical Teacher : https://doi.org/10.1080/0142159X.2023.2200894
Gross O., Azoguy-Levy S., Bourdon O., Foucaut A.-M., Margat A., Lartigue C., Lassale S., Ruelle Y., Wagner A., Gagnayre R. (2023). Apprendre en interprofessionnalité à partir de l’expérience de patients mentors. Pédagogie Médicale: https://doi.org/10.1051/pmed/2022034
Eijkelboom, C., Brouwers, M., Frenkel, J., van Gurp, P., Jaarsma, D., de Jonge, R., Koksma, J., Mulder, D., Schaafsma, E., Sehlbach, C., Warmenhoven, F., Willemen, A., de la Croix, A. (2023). Twelve tips for patient involvement in health professions education. Patient Education and Counseling, 106, 92‑97. https://doi.org/10.1016/j.pec.2022.09.016
Henry-Noel N., Paton M., Wong R., Dawdy K., Karim A., Soliman H., Di Prospero L., Harnett N., DeAngelis C., Desai C., Wiljer D., Harth T., Akkila S., Szumacher E. (2022). Patient engagement in the Continuing Professional Development programs within the department of radiation oncology at the University of Toronto (UTDRO) : A qualitative study. Journal of Medical Imaging and Radiation Sciences, 53(2), 256‑263. https://doi.org/10.1016/j.jmir.2022.03.003
Khalife R., Gupta M., Gonsalves C., Park Y. S., Riddle J., Tekian A., Horsley T. (2022). Patient involvement in assessment of postgraduate medical learners : A scoping review. Medical Education, 56(6), 602‑613. https://doi.org/10.1111/medu.14726
Malau-Aduli B. S. (2022). Patient involvement in assessment : How useful is it? Medical Education, 56(6), 590‑592. https://doi.org/10.1111/medu.14802
Youssef E., Mellor D., Walkerly S., Wright D. J. (2022). Enhancing pharmacy practice doctoral research with patient and public involvement. The International Journal of Pharmacy Practice, 30(3), 288‑291. https://doi.org/10.1093/ijpp/riac014
Henry-Noel N., Paton M., Wong R., Dawdy K., Karim A., Soliman H., Di Prospero L., Harnett N., DeAngelis C., Desai C., Wiljer D., Harth T., Akkila S., Szumacher E. (2022). Patient engagement in the Continuing Professional Development programs within the department of radiation oncology at the University of Toronto (UTDRO) : A qualitative study. Journal of Medical Imaging and Radiation Sciences, S1939-8654(22)00044-3. https://doi.org/10.1016/j.jmir.2022.03.003
Lefkowitz, A., Vizza, J., Kuper, A. (2022). Patients as experts in the illness experience : Implications for the ethics of patient involvement in health professions education. Journal of Evaluation in Clinical Practice. https://doi.org/10.1111/jep.13672
Merle R., Pépin J.-L., Palombi O., Pariset A., Allenet B., Pison C. (2022). Successful Training of Patients to Intervene in Health Education and Clinical Research at Grenoble Patient School. Journal of Patient Experience. Vol. 9: DOI: 10.1177/23743735211069810
Zumstein C., Giacomini A. (2022). Comment intégrer des patients dans la formation et l’évaluation des professionnels de santé ? Revue de la littérature actualisée. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp. 11.
Gross O., Azoguy-Levy S., Bourdon O., Foucaut A.-M., Margat A., Lartigue C., Lassale S., Ruelle Y., Quesnay P., Wagner A., Gagnayre R. (2022). Impacts d’un programme de mentorat par des patients sur les compétences des étudiants en santé en fin de formation initiale. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp. 12-13
Phan T.-T. , Cognet M., Poasevara L., Moscova L., Ferrat E., Cittée J., (2022). Enseignements avec les patients partenaires enseignants (étude EPIC) : vécu et satisfaction des étudiants en troisième cycle de médecine générale de l’Université Paris-Est Créteil. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp. 17-18.
Devos C., Callot D., Ghadi S.M., Ravot M., Carton L., Sannié T., Cornet P., Vatier C., Meyohas M.C.(2022). Apport du patient enseignant dans l’enseignement de la relation en soins, en deuxième cycle des études médicales, à partir de l’échelle temporelle du parcours patient. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p. 19.
Costes R., Aurby J. D., Boyer P., Bruyneel K. (2022). Module Alcool : un enseignement universitaire construit autour du patient. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p. 20.
De Goer B., Soulier L. (2022). Coformation en santé : l’apport des personnes en situation d’exclusion à la formation continue de professionnels de santé. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp. 21-23.
Pottier L, Robert M.C. , Zajaczkowski S., Devantaux P., Bolognini E. (2022). Intervention de patients aphasiques experts dans la formation initiale des orthophonistes. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp. 27-28.
Ferchichi-Barbey S., Bielser F., Gaudin C., Perret N. (2022). Devenir patient.e instructeur.trice en neurologie : défis et perspectives pratiques. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp. 29-30.
Wiesner Conti J., Lucien B., Monachon E., Rae S., Kalumiya K.(2022). Exploration des bonnes pratiques de l’enseignement du partenariat. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p.31.
Zumstein C., Giacomini A. (2022). Intégrer des patients enseignants dans une formation à la prise en charge de la santé mentale : exemple auprès des internes de médecine générale au DMG de Strasbourg. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p.33.
Van Rooij G. , Verheye J.-C., Larsonnier S., Fauchard G., Briand A.-A., Savary P., Lucas M.-A., MH Tokolo M.-H. (2022). L’enseignement de l’éducation thérapeutique intégrant les savoirs des patients en formation initiale en soins infirmiers : il nous manquait quelque chose ! Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p.34.
Ruiz D., Wahl L., Subtil F., Moreau A., Dupraz C.(2022). Impact de l’implication d’enseignants patients dans l’atelier « annonce d’une mauvaise nouvelle » dispensé aux étudiants de second cycle à la faculté de médecine Lyon Est. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p.35.
Larget A., N Tourniaire N., Le Faou Y.(2022). Le patient-enseignant : un médiateur de transformation de la gouvernance pédagogique à l’IFPEK. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p.36.
Rajaonah A., Londres M. (2022). Intervention sur la stigmatisation en santé. Un projet de formation annuelle, issu de la communauté, pour les internes de médecine générale. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp.37-38.
Hallory E. Tournaire N. (2022). (S’) Engager (dans) le partenariat à différents niveaux au sein d’un même enseignement. Un exemple en 2ème cycle des études en médecine à Rennes. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p.39.
Robert N., Gérard A., Moreau A., Saadoun A. (2022). L’expérience de la création d’un pôle patient. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, p.41.
Hansart P, Pellecchia A., Gross O., Ragain-Gire F., Lartiguet P., Bringer J., de la Tribonnière X. (2022). Pérennité de l’engagement de patients partenaires et de professionnels de santé au coenseignement, 18 mois après validation du DU « Se former au partenariat patient- professionnel de santé » de Montpellier. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp.51-52.
Fourel G., JSatet J., Prudhomme S., Helot- Gerard V., Lechopier N. (2022). Partage d’expérience sur l’engagement des patients dans le module « Entretien avec un patient » de l’UE Humanités Médicales. Les actes du 3ème Colloque interuniversitaire sur l’engagement des patients dans la formation médicale, pp.56-57.
Malau-Aduli, B. S. (2022). Patient involvement in assessment : How useful is it? Medical Education. https://doi.org/10.1111/medu.14802
Kline C.C., Riganti P., Moller-Hansen A., Godolphin W., Towle A.(2022) Patients benefit from mentoring students in an interprofessional health mentors program: A contextual-developmental analysis, Medical Teacher, DOI: 10.1080/0142159X.2021.2020737
Khalife R., Gupta M., Gonsalves C., Park Y. S., Riddle J., Tekian A., Horsley T. (2022). Patient involvement in assessment of postgraduate medical learners : A scoping review. Medical Education.
https://doi.org/10.1111/medu.14726
Price A., Damaraju A., Kushalnagar P., Brunoe S., Srivastava U., Debidda M., Chu L. (2021). « Coproduction, Coeducation, and Patient Involvement : Everyone Included Framework for Medical Education Across Age Groups and Cultures. » JMIR Medical Education, 7(4), e31846. https://doi.org/10.2196/31846
Pageau S., Burnier I., Fotsing S. (2021), « Stratégies de recrutement et de formation des patients en éducation : une synthèse de la littérature« . Pédagogie Médicale N° 22, pp. 91-100
Merle R. (2021). Engagement des patients dans la formation et la recherche en santé. Thèse de doctorat en Sciences cognitives, psychologie et neurocognition. Université de Grenoble.
Slater N., VandeWaa E., Bydalek K., McAdams E. (2021). “Building Better patient outcomes through interprofessional collaboration: A standardized patient experience with pharmacy, nursing, and physician assistant students”. Journal of Interprofessional Education & Practice, october 7, https://doi.org/10.1016/j.xjep.2021.100460
Brown C. L., Marsch N., Lavallee M., Menez L. (2021). “Opened my eyes”: Learning from interprofessional engagement with indigenous communities”. Journal of Interprofessional Education & Practice, october 7, https://www.sciencedirect.com/science/article/abs/pii/S2405452621000653?via%3Dihub
Park C. W., Ahmed S. E. S., Chua C. U., Olubodun O. R., Radford D. J. (2021). Response to : Understanding patient involvement in judging students’ communication skills in OSCEs. Medical Teacher, 1.c https://doi.org/10.1080/0142159X.2021.1993163
Massé J., Poulin G., Côté M., Tremblay M.-C. (2021). Patient Engagement in Medical Education During the COVID-19 Pandemic : A Critical Reflection on an Epistemic Challenge. MedEdPublish, 10.
https://doi.org/10.15694/mep.2021.000103.2
Maury A., Berkesse A., Lucas G., Mouriaux F., Allory E. (2021). » Intégration des patients enseignants dans les études de médecine« . Santé Publique. Vol. 33, pp. 559-568
Buck Jensen C., Norbye B., Abrandt Dahlgren M., Iversen A. (2021).
« Patient participation in interprofessional learning and collaboration with undergraduate health professional students in clinical placements: a scoping review ». Journal of Interprofessional Education & Practice,
doi: https://doi.org/10.1016/j.xjep.2022.100494.
Sannié T. (2019). « Des patients partenaires d’enseignement : une avancée historique dans les formations médicales », Santé publique, 2019/4 (Vol. 31), pp. 473-474.
Beresford, P. (2019). Pour une approche pluraliste et multidimensionnelle de la pédagogie en santé : un regard britannique sur la participation des usagers à la formation professionnelle. Vie sociale, 25-26, pp. 71-81. https://doi.org/10.3917/vsoc.191.0071
Casagrande, A. (2019). Associons nos savoirs : pour une démocratie des expériences. Vie sociale, 25-26, pp. 61-70.
https://doi.org/10.3917/vsoc.191.0061
Chevallier, F., Duhot, D., Ruelle, Y., Mercier, A., Lombrail, P. & Saynac, Y. (2020). Plaidoyer pour l’intégration des patients formateurs dans l’enseignement des futurs médecins généralistes à partir de l’expérience de l’université Sorbonne Paris Nord et de la littérature internationale. Revue française des affaires sociales, , pp.281-293.
https://doi.org/10.3917/rfas.201.0281
Jouet, E., Zimmer, F., Damiani, É., Chapeau, M. & Lévy-Bellahsen, D. (2019). Produire des savoirs, construire de nouvelles identités et… partager le pouvoir : quand les personnes accompagnées forment les professionnels. Vie sociale, 25-26, pp. 209-224.
https://doi.org/10.3917/vsoc.191.0209
Louzeau P., Marsick A., Groud P.-F. (2019). Inclure les savoirs expérientiels pour améliorer la relation de soin et la formation des professionnels de santé. Vie sociale, 25-26, pp. 291-302. https://doi.org/10.3917/vsoc.191.0291
Towle, A. (2019). Participation des patients, des aidants et des membres de la communauté ayant une expérience vécue à la formation des professionnels de santé. Vie sociale, 25-26, pp. 83-94.
https://doi.org/10.3917/vsoc.191.0083
Flora L. (2017). « Quand les patients concourent à la formation des professionnels de la santé : l’exemple de l’Université de Montréal pourrait-il servir en France ? », Santé éducation, Numéro spécial, Janvier-avril, pp 21-23.
Gross 0, Gagnayre R. (2017). « Caractéristiques des savoirs des patients et liens avec leurs pouvoirs d’action : implication pour la formation médicale », Revue française de pédagogie, N°201, pp. 71-82.
Lechopier N, Hem C, Lasserre E, Granier B, Douzet C, Moreau A. (2016). Involving patients in the early-career medical curriculum. An experiment in three medical schools in France. International Association for Medical Education.
Pelletier JF, Tourette-Turgis C (2016) Recovery-oriented Medical Training: A Narrative Literature Review for the University of Recovery as a New Concept of Co-learning between Patients and (Future) Healthcare Providers. J Community Med Health Educ 6: 495.
Flora L. (2016)., « Le savoir des malades à travers un référentiel de compétences « patient » utilisé en éducation médicale », La recherche en éducation, N°15, pp. 59-75.
Charoy-Brejon C. (2016). Le patient formateur dans un enseignement de l’approche centrée patient à la faculté de médecine de l’UPEC, projet exploratoire. Thèse de médecine, spécialité de médecine générale, Faculté de médecine de Créteil, Université Paris est, Créteil.
Lechopier N. (2015). « Participation des patients à la formation médicale ». Rhizome 2015/4, N° 58, pp. 15-16
Flora L. (2015), Le patient formateur : nouveau métier de la santé ? Comment les savoirs expérientiels de l’ensemble des acteurs de santé peuvent relever les défis de nos systèmes de santé, Presses Académiques Francophones, Sarrebruck, Allemagne.
Towle A, Godolphin W. (2015). « Patients as teachers: promoting their authentic and autonomous voices ». Clinical Teaching. N°12(3), pp.149-154.
Flora L. (2014), « Le patient formateur, un nouveau métier pour accompagner un nouveau paradigme au sein du système de santé », dans, (Coord. : Jouet E., Las Vergnas O., Noel-Hureaux E.), Nouvelles interventions réflexives dans la recherche en santé : du savoir expérientiel des malades aux interventions des professionnels de santé, Paris, Archives contemporaines, pp.21-41.
Thune, F. (2013). Impacts de l’intervention des patients aides formateurs dans les formations VIH/Sida destinées aux médecins et infirmiers au Burkina Faso. Sociologies pratiques, 27, pp. 169-170.
https://doi.org/10.3917/sopr.027.0167
Lauckner H, Doucet S, Wells S. (2012). « Patients as educators: The challenges and benefits of sharing experiences with students ». Medical Education. N°46(10), pp. 992-1000
Towle A., Goldophin W. (2011), « The Neglect of Chronic Disease Self-Management in Medical Education: Involving Patients as Educators », Academic Medicine, Vol. 86, No. 11 / November 2011, p. 1350.
Towle A, Bainbridge L, Godolphin W, Katz A, Kline C, Lown B, et al. (2010). Active patient involvement in the education of health professionals. Medical Education. N° 44 (1), pp. 64-74.
Towle A. et al. (2010) – « Active patient involvement in the education of health professionnals », Teacher Higher Education. N° 16 : pp. 495-504.
Flora L. (2010), « Le patient formateur auprès des étudiants en médecine : un concept effectif », Revue Générale de Droit Médical, N° 34, mars 2010, pp.115-135
Barr J, Ogden K, Rooney K. (2010). « Viewpoint: Let’s teach medical students what patient partnership in clinical practice can be, with the involvement of educationally engaged patients ». International Journal of Consumer Studies. N°34 (5), pp.610-612.
Jha V, Quinton ND, Bekker HL, Roberts TE. (2009). »What educators and students really think about using patients as teachers in medical education: A qualitative study ». Medical Education. N° 43(5), pp.449-456.
Jha V., et al. (2009). « Strategies and interventions for the involvement of real patients in medical education: a systematic review », Medical Education. N° 43, pp. 10-20.
Morgan A., Jones D., (2009) – « Perceptions of service user and carer involvement in healthcare education and impact on students’ knowledge and practice: a literature review », Medical Teacher. N° 31: pp. 82-95
Bokken J. J. A. L., Rethans P. M. J-J, Scherpbier P. M. A., Van Der Vleuten P. M. C. (2008). « Strengths and Weaknesses of Simulated and Real Patients in the Teaching of Skills to Medical Students: A Review. Simulation in Healthcare ». The Journal of the Society for Simulation in Healthcare. N° 3 (3), pp. 161-169.
Flora L. (2008). Le patient formateur auprès des étudiants en médecine : De l’approche historique, la contextualisation à l’intervention socio éducative. Sciences de l’éducation, Université Vincennes Saint Denis – Paris 8
Flora L. (2007). Le patient formateur auprès des étudiants en médecine, mémoire de maitrise de droit de la santé, Université Vincennes-Saint Denis, Paris 8.
Jackson A, Blaxter L, Lewando-Hundt G. (2003). « Participating in medical education: Views of patients and carers living in deprived communities ». Medical Education. N° 37 (6), pp.532-538.
Ikkos G. (2003). »Engaging patients as teachers of clinical interview skills ». Psychiatric Bulletin. N° 27(8), pp.312-315.
Klein et al. (2000) – « The effects of the participation of patients with cancer in teaching communication skills to medical undergraduates : a randomised study with follow-up after 2 years », Eur J Cancer. N° 36: pp.273-281.
Lindsley HB, Welch KE, Bonaminio G. (1998). « Using patients to teach functional assessment of patients with arthritis ». Academic Medicine. N° 73 (5),p.583.
Vail R, Mahon-Salazar C, Morrison A, Kalet A. (1996). « Patients as teachers: an integrated approach to teaching medical students about the ambulatory care of HIV infected patients ». Patient Education and Counseling. N° 27(1),pp.95-101.
Novack, D.H., et al. (1992), « Teaching medical interviewing: a basic course on Interviewing and the physician-patient relationship », Archives of International Medicine, N°152, pp. 1814-1820.
Implication des patients dans le Soin, les soins
Hordiienko, Y., Fagerström, C., Rafnar Finnbogadóttir, H. (2024). Patient involvement in interdisciplinary bedside rounds from nursing and medical students’ perceptions. A Swedish qualitative interview study. Scandinavian Journal of Caring Sciences, 38(4), 1050‑1060. https://doi.org/10.1111/scs.13307
Istanboulian, L., Gilding, A., Hamilton, L., Master, T., Bingler, S., Hill, M., Isani, S., Kazi, S., Coppinger, S., Smith, K. (2024). Reported roles of care partners in a specialized weaning centre-perspectives of patients, care partners, and health care providers. Frontiers in Health Services, 4, 1439410. https://doi.org/10.3389/frhs.2024.1439410
Hoffmann, K., Wojczewski, S., Rumpler, N., George, A., de Boeckxstaens, P. (2024). Giving patients a voice for healthcare reform in Austria : The qualitative voice-study. Family Practice, 41(5), 790‑797. https://doi.org/10.1093/fampra/cmae031
Burdeu, G., Rasmussen, B., Lowe, G., Considine, J. (2024). Acute Care Nurses’ Partnership With Patients to Recognise and Respond to Changes in Patients’ Clinical States : A Qualitative Study. Journal of Advanced Nursing. https://doi.org/10.1111/jan.16520
Donoso, F. S., Carver, T., Ficorella, L., Fennell, N., Antoniou, A. C., Easton, D. F., Tischkowitz, M., Walter, F. M., Usher-Smith, J. A., & Archer, S. (2024). Improving the communication of multifactorial cancer risk assessment results for different audiences : A co-design process. Journal of Community Genetics. https://doi.org/10.1007/s12687-024-00729-4
Dong, F., Wu, Y., Wang, Q., Huang, Y., Wu, Q. (2024). Factors influencing patient engagement in decision making for catheter ablation of atrial fibrillation : A cross-sectional survey. European Journal of Cardiovascular Nursing, zvae141. https://doi.org/10.1093/eurjcn/zvae141
Caron M.-E., Ouellet N., Bergeron D. (2024). Contexte et retombées de l’engagement de patients partenaires en milieu clinique : une étude qualitative descriptive. Educ Ther Patient/Ther Patient Educ. Vol. 16, Number 1, 2024, https://doi.org/10.1051/tpe/2024018
Côté, C. I. (2024). A critical and systematic literature review of epistemic justice applied to healthcare : Recommendations for a patient partnership approach. Medicine, Health Care, and Philosophy, 27(3), 455‑477. https://doi.org/10.1007/s11019-024-10210-1
Cunningham, M. R., Rattray, N. J. W., McFadden, Y., Berardi, D., Daramy, K., Kelly, P. E., Galbraith, A., Lochiel, I., Mills, L., Scott, Y., Chalmers, S., Lannigan, A., Rattray, Z. (2024). Recounting the untold stories of breast cancer patient experiences : Lessons learned from a patient-public involvement and engagement storytelling event. The International Journal of Pharmacy Practice, riae052. https://doi.org/10.1093/ijpp/riae052
Hsu, V. J., Moodie, M., Dumes, A. A., Rogers, E. L., Carter, C., Broder, E., Couture, D., Löwy, I., Mendenhall, E. (2024). Patients as knowledge partners in the context of complex chronic conditions. Medical Humanities, medhum-2024-012957. https://doi.org/10.1136/medhum-2024-012957
Robert, G., Donetto, S., Masterson, D., Kjellström, S. (2024). Applying models of co-production in the context of health and well-being. A narrative review to guide future practice. International Journal for Quality in Health Care : Journal of the International Society for Quality in Health Care, 36(3). https://doi.org/10.1093/intqhc/mzae077
Shariff, Z., Dale, J., Spencer, R. A. (2024). General practice management after transition events : Protocol for an experience-based co-design study. BJGP Open, BJGPO.2023.0244. https://doi.org/10.3399/BJGPO.2023.0244
Wang, H., Jia, J., Fan, Y., Chen, H., Lou, Y., Wang, X., Huang, X. (2024). Impact of inpatient self-efficacy and trust in physicians on inpatient satisfaction with medical services : The mediating role of patient participation in medical decision-making. Frontiers in Psychology, 15, 1364319. https://doi.org/10.3389/fpsyg.2024.1364319
Jin-Shil K., Kye Hun K., Mi-Seung S., Seongkum H., Jung-Ah L., KyungAh C., Minjeong A. (2024) Evaluating dyadic factors associated with self-care in patients with heart failure and their family caregivers: Using an Actor-Partner Interdependence Model. PLOS one, Sept 19, https://doi.org/10.1371/journal.pone.0308515
Rezzonico V., Berrut S.; Bienvenu C.,Fiscalini A.; Ganz-Blättler U. ; Eicher M., Peytremann-Bridevaux I., Arditi C. (2024) Les enquêtes SCAPE en Suisse pour recueillir l’opinion des patientes et patients et favoriser le partenariat patient-chercheur. Le partenariat de soin avec le patient: analyses : Université Côte d’azur, N°. 7, pp. 44-63.
Shaw, K. L., Calvert, M. J., Borrow, P., Chakera, E., Chakraverty, R., Hughes, S. E., Khatsuria, F., Kinsella, F. A. M., McMullan, C., Richardson-Abraham, J., Yarosh, V., Aiyegbusi, O. L. (2024). Integrating patient and public involvement and engagement in translational medicine. Lancet (London, England), S0140-6736(24)01552-6. https://doi.org/10.1016/S0140-6736(24)01552-6
Barrett, L., Hackett, J., Taylor, J., Papworth, A., Walker, G., Fraser, L. (2024). Evaluating parent and public involvement activities within a paediatric palliative care research centre : Route map to impactful and meaningful engagement. Palliative Medicine, 2692163241266374. https://doi.org/10.1177/02692163241266374
Barlevy, D., Juengst, E., Kahn, J., Moreno, J., Lambert, L., Charo, A., Chneiweiss, H., Farooque, M., Guston, D. H., Hyun, I., Knoepfler, P. S., Selin, C., Wilbanks, R., Zaghlula, M., Scott, C. T. (2024). Governing with public engagement : An anticipatory approach to human genome editing. Science & Public Policy, 51(4), 680‑691. https://doi.org/10.1093/scipol/scae010
Whitmore, C., Mytkolli, L., Mangialardi, N., Maghera, J., Rudick, A., Shephard, K., Zazzera, S., Saiva, A., McQuire, T., Senior, P., Sherifali, D., Selby, P. (2024). Partnered Recruitment : Engaging Individuals With Lived Experience in the Recruitment of Co-Design Participants. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(4), e14131. https://doi.org/10.1111/hex.14131
Klassen, T. (2024). Ethical patient engagement in healthcare governance. Healthcare Management Forum, 37(4), 301‑304.
Poomchaichote, T., Kiatying-Angsulee, N., Boonthaworn, K., Naemiratch, B., Ruangkajorn, S., Prapharsavat, R., Thirapantu, C., Sukrung, K., Limmathurotsakul, D., Osterrieder, A., Cheah, P. Y. (2024). Embedding community and public voices in co-created solutions to mitigate antimicrobial resistance (AMR) in Thailand using the « Responsive Dialogues » public engagement framework. Antimicrobial Resistance and Infection Control, 13(1), 71.
Richards, D. P., Twomey, R., Flynn, T., Hunter, L., Lui, E., Stordy, A., Thomas, C., Khan, K. (2024). Patient engagement in a Canadian health research funding institute : Implementation and impact. BMJ Open, 14(7), e082502.
Jones, U., Hamana, K., Busse, M. (2024). Promoting Physical Activity in Huntington’s Disease : Co-Design of a Care Partner Resource. Journal of Huntington’s Disease. https://doi.org/10.3233/JHD-240014
Morken, V., Perry, L. M., Coughlin, A., O’Connor, M., Chmiel, R., Xinos, S., Peipert, J. D., Garcia, S. F., Linder, J. A., Ackermann, R. T., Kircher, S., Mohindra, N. A., Aggarwal, V., Weitzel, M., Nelson, E. C., Elwyn, G., Van Citters, A. D., Barnard, C., Cella, D., Hirschhorn, L. R. (2024). Implementation of a Co-Design Strategy to Develop a Dashboard to Support Shared Decision Making in Advanced Cancer and Chronic Kidney Disease. Journal of Clinical Medicine, 13(14).
Musselman, K., Shin, J. H., Lamparello, N. A., Ahsan, M. D., Havryliuk, Y., Schiffman, M., Fenster, T., Pepin, K. (2024). Patient Experiences With a Multidisciplinary Fibroid Program. Journal of Minimally Invasive Gynecology, 31(7), 592-600.e2.
Edwards M., Seddon K., Nelson A., Arbierg A., Mahe I., Pearson M., Langendoen J., Cannegieter J., Konstantinides S., Mooijaart S., Smitz S., Klok E., Noble S. (2024) Patient and public involvement in a pan-European study to develop and evaluate a shared decision-making support tool to support decisions about antithrombotic therapy in patients with advanced cancer towards the end of life. BMJ. July, Vol. 29- Sppl. 1: https://ebm.bmj.com/content/29/Suppl_1/A30.1
Engelaar, M., Bos, N., van Schelven, F., Lorenzo I Sunyer, N., Couespel, N., Apolone, G., Brunelli, C., Caraceni, A., Ferrer, M., Groenvold, M., Kaasa, S., Ciliberto, G., Lombardo, C., Pietrobon, R., Pravettoni, G., Sirven, A., Vachon, H., Gilbert, A., Rademakers, J. (2024). Collaborating with cancer patients and informal caregivers in a European study on quality of life : Protocol to embed patient and public involvement within the EUonQoL project. Research Involvement and Engagement, 10(1), 59. https://doi.org/10.1186/s40900-024-00597-9
Evans, D., Rothschild, S., Tordella, C., Chacón, M. (2024). Leveraging Patient Engagement Through Collaboration for Improved Global Health Outcomes in Sarcoma. American Society of Clinical Oncology Educational Book. American Society of Clinical Oncology. Annual Meeting, 44(3), e438934. https://doi.org/10.1200/EDBK_438934
Giannitrapani, K. F., Lin, K., Maheta, B., Isenberg, S. R. (2024). Co-Design Use in Palliative Care Intervention Development : A Systematic Review. Journal of Pain and Symptom Management, S0885-3924(24)00812-1. https://doi.org/10.1016/j.jpainsymman.2024.06.007
Jones, F., Domeny, A., Fish, J., Leggat, F., Patel, I., McRae, J., Rowe, C., Busse, M. E. (2024). Using co-design methods to develop new personalised support for people living with Long Covid : The « LISTEN » intervention. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(3),e14093. https://doi.org/10.1111/hex.14093
Jørgensen, K., Lerbæk, B., Frederiksen, J., Watson, E., Karlsson, B. (2024). Patient Participation in Mental Health Care—Perspectives of Healthcare Professionals and Patients : A Scoping Review. Issues in Mental Health Nursing, 1‑17. https://doi.org/10.1080/01612840.2024.2358931
Kiss, N., Jongebloed, H., Baguley, B., Marshall, S., White, V. M., Livingston, P. M., Bell, K., Young, L., Sabesan, S., Swiatek, D., Boltong, A., Britto, J. M., Ugalde, A. (2024). Meaningful consumer involvement in cancer care : A systematic review on co-design methods and processes. JNCI Cancer Spectrum, pkae048. https://doi.org/10.1093/jncics/pkae048
Massey, J., Tsianakas, V., Gordon, A., Sadler, N., Robert, G. (2024). Co-designing complex therapy interventions with parents as partners in the care of children with cerebral palsy : An Experience-based Co-design study in England. Research in Developmental Disabilities, 151, 104793.
https://doi.org/10.1016/j.ridd.2024.104793
Ankomah, S. E., Fusheini, A., Derrett, S. (2024). ’Two heads are better than one’-exploring the experiences of Ghanaian communities on the role of patient and public participation in health system improvement. Health Policy and Planning, 39(6), 603‑612. https://doi.org/10.1093/heapol/czae029
Guarino, A., Negrogno, L., Compare, C., Madeo, A., Bolognini, P., Degli Esposti, L., Filippi, M., Lamberini, F., Morrone, M., Masetti, M., Serra, A. M., Albanesi, C. (2024). « A Feeling of Safeness and Freedom » : The Promotion of Mental Health Recovery Through Co-Production in an Italian Community Organization. Community Mental Health Journal. https://doi.org/10.1007/s10597-024-01279-2
McKeon, G., Curtis, J., Rostami, R., Sroba, M., Farello, A., Morell, R., Steel, Z., Harris, M., Silove, D., Parmenter, B., Matthews, E., Jamaluddin, J., Rosenbaum, S. (2024). Co-designing a Physical Activity Service for Refugees and Asylum Seekers Using an Experience-Based Co-design Framework. Journal of Immigrant and Minority Health. https://doi.org/10.1007/s10903-024-01587-5
Keelson S. A., Odei Addo J., Amoah J.(2024) The impact of patient engagement on service quality and customer well-being: an introspective analysis from the healthcare providers’ perspective, Cogent Public Health, 11:1, 2340157, DOI: 10.1080/27707571.2024.2340157
Sheldon E., Naseeb Ezaydi N., Ditmore M., Fuseini O., Ainley R., MBBS, Robinson K., Hind D., Lobo A. J. (2024). Patient and public involvement in the development of health services: Engagement of underserved populations in a quality improvement programme for inflammatory bowel disease using a community‐based participatory approach. Health Expectations. 2024;27:e14004. https://doi/pdf/10.1111/hex.14004
Scholz, B., Kirk, L., Warner, T., O’Brien, L., Kecskes, Z., Mitchell, I. (2024). From a Single Voice to Diversity : Reframing « Representation » in Patient Engagement. Qualitative Health Research, 104973232312216
74. https://doi.org/10.1177/10497323231221674
Holm, A., Rodkjær, L. Ø., Bekker, H. L. (2024). Integrating Patient Involvement Interventions within Clinical Practice : A Mixed-Methods Study of Health Care Professional Reasoning. MDM Policy & Practice, 9(1), 23814683241229987. https://doi.org/10.1177/23814683241229987
Jones, G., Bailey, L., Beeken, R. J., Brady, S., Cooper, C., Copeland, R. J., Crosland, S., Dawson, S., Faires, M., Gilbody, S., Haynes, H., Hill, A., Hillison, E., Horspool, M., Lee, E., Li, J., Machaczek, K. K., Parrott, S., Quirk, H., … Peckham, E. (2024). Supporting physical activity through co-production in people with severe mental ill health (SPACES) : Protocol for a randomised controlled feasibility trial. Pilot and Feasibility Studies, 10(1), 32. https://doi.org/10.1186/s40814-024-01460-0
Milton, A., Ozols A M, I., Cassidy, T., Jordan, D., Brown, E., Arnautovska, U., Cook, J., Phung, D., Lloyd-Evans, B., Johnson, S., Hickie, I., Glozier, N. (2024). Co-Production of a Flexibly Delivered Relapse Prevention Tool to Support the Self-Management of Long-Term Mental Health Conditions : Co-Design and User Testing Study. JMIR Formative Research, 8, e49110. https://doi.org/10.2196/491
Jones, G., Bailey, L., Beeken, R. J., Brady, S., Cooper, C., Copeland, R. J., Crosland, S., Dawson, S., Faires, M., Gilbody, S., Haynes, H., Hill, A., Hillison, E., Horspool, M., Lee, E., Li, J., Machaczek, K. K., Parrott, S., Quirk, H., … Peckham, E. (2024). Supporting physical activity through co-production in people with severe mental ill health (SPACES) : Protocol for a randomised controlled feasibility trial. Pilot and Feasibility Studies, 10(1), 32. https://doi.org/10.1186/s40814-024-01460-0
Milton, A., Ozols A M, I., Cassidy, T., Jordan, D., Brown, E., Arnautovska, U., Cook, J., Phung, D., Lloyd-Evans, B., Johnson, S., Hickie, I., Glozier, N. (2024). Co-Production of a Flexibly Delivered Relapse Prevention Tool to Support the Self-Management of Long-Term Mental Health Conditions : Co-Design and User Testing Study. JMIR Formative Research, 8, e49110. https://doi.org/10.2196/491
Westerink, H. J., Oirbans, T., Garvelink, M. M., van Uden-Kraan, C. F., Zouitni, O., Bart, H. A. J., van der Wees, P. J., van der Nat, P. B. (2023). Barriers and facilitators of meaningful patient participation at the collective level in healthcare organizations : A systematic review. Health Policy (Amsterdam, Netherlands), 138, 104946. https://doi.org/10.
Monfort, E., Latour, P. (2023). Fostering patient engagement through the co-design of seizure detection and monitoring technologies : A roadmap for collaboration between research and development. Revue Neurologique, S0035-3787(23)01115-3. https://doi.org/10.1016/j.neurol.2023.10.005
Cyr G., Pomey M.-P. (2023). Les savoirs des usagers, un ingrédient clé pour l’innovation en santé et la pérennité de nos systèmes de santé. in L’expérience dans l’innovation en santé modes éphémères ou nouveau paradigme ? (dir. Flora, Grenier Ponsignon): London: Iste, pp. 21-38
Cheneau A. Fargeon V (2023). L’expérience des proches dans l’accompagnement des personnes atteintes de maladies neurodégénératives. in L’expérience dans l’innovation en santé modes éphémères ou nouveau paradigme ? (dir. Flora, Grenier Ponsignon): London: Iste, pp. 39-58
Best S., Dadich A. et Williams S. (2023). Identité professionnelle, identité d’équipe et identité numérique : l’impact sur l’expérience des patients. in L’expérience dans l’innovation en santé modes éphémères ou nouveau paradigme ? (dir. Flora, Grenier Ponsignon): London: Iste, pp. 103-124
Ségard É., Chergin P. (2023). Mobiliser l’expérience des personnes handicapées : une nécessité dans le transfert des innovations. in L’expérience dans l’innovation en santé modes éphémères ou nouveau paradigme ? (dir. Flora, Grenier Ponsignon): London: Iste, pp. 125-139.
Laporte M.-E., Gilbert P., Zinaï K. (2023). Le Patient-Centered Care à l’hôpital public : une guerre des mondes ? in L’expérience dans l’innovation en santé modes éphémères ou nouveau paradigme ? (dir. Flora, Grenier Ponsignon): London: Iste, pp. 171-184.
Pereira Paulo L., *, Tourette-Turgis C., Vannier M.-P. (2023). La diplomation de patient•es partenaires en oncologie : un dispositif soutenant l’engagement du patient•e en oncologie. Psycho-oncologie. Nov. 9. DOI: 10.32604/po.2023.042981
Tourniaire N., Leseur J., Roy A., de la Motte Rouge A., Pougheon Bertrand D. (2023) Comment intégrer un patient partenaire dans une équipe de soins ? Santé publique. vol. 35; N°3 – mai-juin 2023, pp. 285-295.
Nielssen I., Santana M., Pokharel S., Strain K.,Kiryanova V.,Zelinsky S., Khawaja Z., Khanna P.,Rychtera A.,MN, Ambasta A. (2023). Operationalizing the principles of patient engagement through a Patient Advisory Council: Lessons and recommendations. Health Expectations. 2023;1–12. Doi : 10.1111/hex.13909
Fredriksson, M., Modigh, A. (2023). Public involvement in the Swedish health system : Citizen dialogues with unclear outcomes. BMC Health Services Research, 23(1), 947. https://doi.org/10.1186/
Ankomah, S. E., Fusheini, A., Derrett, S. (2023). Implementing patient-public engagement for improved health : Lessons from three Ghanaian community-based programmes. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13866
Hung, L., Wong, K. L. Y., Chan, I., Vasarhelyi, K. (2023). Facilitators of and barriers to patient and public involvement in building learning health systems in community health services settings : A scoping review protocol. BMJ Open, 13(9), e073837. https://doi.org/10.1136/bmjopen-2023-073837
Eull, D., Looman, W., O’Conner-Von, S. (2023). Transforming acute pain management in children : A concept analysis to develop a new model of nurse, child and parent partnership. Journal of Clinical Nursing, 32(15‑16), 5230‑5240. https://doi.org/10.1111/jocn.16625
Sinvani, L., Strunk, A., Ardito, S., Gordon, S., Liu, Y., Schantz, E., Arroon, A., Ilyas, A., Gromova, V., Polokowski, A., Levin, J., Makhnevich, A., D’Angelo, S., Boltz, M. (2023). Reducing Behavioral and Psychological Symptoms of Dementia in Acutely Ill Patients via Patient Engagement Specialists : A Pilot Feasibility Study. Gerontology & Geriatric Medicine, 9, 23337214231192160. https://doi.org/10.1177/23337214231192162
van Dijk, L. M., van Eikenhorst, L., Karapinar-Çarkit, F., Wagner, C. (2023). Patient participation during discharge medication counselling : Observing real-life communication between healthcare professionals and patients. Research in Social & Administrative Pharmacy : RSAP, 19(8), 1228‑1235. https://doi.org/10.1016/j.sapharm.2023.05.008
Yang, J. M. K., Vaiphei, K., Siliya, M., Mkandawire, T., Dolman, C., Heron, J., Wilson, S., Yaresheemi, S., Kitney, D., Bailey, L., Apsey, C., Liwimbi, O., Stewart, R., Thippeswamy, H., Jones, I., Chorwe-Sungani, G., Chandra, P., Di Florio, A. (2023). Postpartum psychosis : A public involvement perspective across three continents. Archives of Women’s Mental Health. https://doi.org/10.1007/s00737-023-01347-8
Tobiano, G., haboyer, W. (2023). Starting at the top : Culture change has the potential to advance the patient participation agenda in Iranian hospitals. Evidence-Based Nursing, ebnurs-2023-103698. https://
Watson E., Repper J. (2023). Peer Support in mental health and social care services: Where are we now? IMROC.
Brown, C., Shahid, S., Bernardes, C. M., Toombs, M., Clark, P. J., Powell, E. E., Valery, P. C. (2023). Partnering with support persons and clinicians to improve the health care experiences of patients with cirrhosis. Journal of Clinical Nursing, 32(11‑12), 2559‑2574.
https://doi.org/10.1111/jocn.16302
Buur, L. E., Bekker, H. L., Madsen, J. K., Søndergaard, H., Kannegaard, M., Khatir, D. S., Finderup, J. (2023). Patient involvement interventions in patients with kidney failure making end-of-life care decisions : A scoping review. JBI Evidence Synthesis. https://doi.org/10.11124/JBIES-22-00261
Law, B., Chhatwal, P. K., Licskai, C., Scurr, T., Sibbald, S. L. (2023). Patient engagement in interprofessional team-based chronic disease management : A qualitative description of a Canadian program. Patient Education and Counseling, 114, 107836.
https://doi.org/10.1016/j.pec.2023.107836
Aiyegbusi, O. L., Cruz Rivera, S., Oliver, K., Manna, E., Collis, P., King-Kallimanis, B. L., Bhatnagar, V., Herold, R., Hopkins, J., Campbell, L., Croker, A., Leach, M., Calvert, M. J. (2023). The opportunity for greater patient and public involvement and engagement in drug development and regulation. Nature Reviews. Drug Discovery, 22(5), 337‑338.
https://doi.org/10.1038/d41573-023-00031-x
Belgodère, L., Pougheon Bertrand, D., Jaulent, M. C., Rabeharisoa, V., Janssens, W., Rollason, V., Barbot, J., Vernant, J. P., Oualikene Gonin, W., Maison, P., Ankri, J. (2023). Patient and public involvement in the benefit-risk assessment and decision concerning health products : Position of the Scientific Advisory Board of the French National Agency for Medicines and Health Products Safety (ANSM). BMJ Global Health, 8(5). https://doi.org/10.1136/bmjgh-2023-011966
Younus, M. M., Alkhakany, M., Bahri, P., Caro, A., Rostom, H., Ndagije, H. B., Elhawary, M. A. (2023). The ISoP PatEG-SIG for Promoting Patient Engagement in Pharmacovigilance : A Change of Paradigm is Needed. Drug Safety, 1‑5. https://doi.org/10.1007/s40264-023-01313-4
Benson L.n Chhatwal P. K., Lisckai C., Scurr T., Sibbald S. L.(2023). Patient Engagement in Interprofessional Team-Based Chronic Disease Management: A Qualitative Description of a Canadian Program. Patient Education and Couselling. June 3, https://doi.org/10.1016/j.pec.2023.107836
Macdonald G., Asgarova S., Hartford W., Berger M., Cristancho S., Nimmon L.(2023) What do you mean, ‘negotiating?’: Patient, physician, and healthcare professional experiences of navigating hierarchy in networks of interprofessional care, Journal of Interprofessional Care,
DOI: 10.1080/13561820.2023.2203722
Schaad B.(Dir.), (2023). (IN) hospitalités hospitalières, conflits, médiation, réconcilation ? Editions médicales Suisse.
Panese F. (2023). « « Les malades passent à l’acte » : apories de la biomédecine et quêtes de reconnaissance des patients », (Dir. Schaad B.), in (IN) hospitalités hospitalières, conflits, médiation, réconcilation ? Editions médicales Suisse, pp. 39-52.
Harvard, S., Winsberg, E. (2023). Patient and Public Involvement in Health Economics Modelling Raises the Need for Normative Guidance. PharmacoEconomics. https://doi.org/10.1007/s40273-023-01274-7
Minheere, A., Lambrechts, W., Mampaey, J., Stough, T., Caniëls, M. C. J., Semeijn, J. (2023). Patient Power and Empowerment : Mitigating Elements of Valuable Patient Participation in Healthcare Collaboratives. Behavioral Sciences (Basel, Switzerland), 13(4). https://doi.org/10.3390/bs13040347
Abelson J, Tripp L, MacNeil M, Lang A., Fancot C., Gannan R., Granieri R., Hofstetter C., King B., Maybee A., Smith M. You J., Evaluating patient working group (2023). Development of the Engage with Impact Toolkit: A comprehensive resource to support the evaluation of patient, family and caregiver engagement in health systems. Health Expectations : an International Journal of Public Participation in Health Care and Health Policy. Mar. DOI: 10.1111/hex.13742. PMID: 36942646.
O’Sullivan, K.; Downes, C.; Monahan, M.; Morrissey, J.; Byrne, G.; Farrell, G.; Gibbons, P.; Higgins, A. (2023). Operationalising a Recovery-Oriented Support and Information Programme Online: The EOLAS Programme. Int. J. Environ. Res. Public Health, 20, 4417. https://doi.org/10.3390/ijerph20054417
Zhukovsky D. S., Soliman P. , Liu D., Meyer M., Haider A., Heung Y., Gaeta S., Lu K., Stepan K., Stanton P., Rodriguez A., Bruera E. (2023). Patient Engagement With Early Stage Advance Care Planning at a Comprehensive Cancer Center. The Oncologist, XX, 1–9
https://doi.org/10.1093/oncolo/oyad015
Dorsa M., Lacamoire T., Duvivier M., Zucchello A., Naiditch M , Sannié T., Limbourg A., Pierre Yves Traynard .- Y. (2022). Co-construction et « perspective patient » : la démarche d’intervention du Pôle de ressources en éducation thérapeutique du patient d’Île-de-France. Educ Ther Patient/Ther Patient Educ Vol. 14, N°2, https://doi.org/10.1051/tpe/2023004
Watkins V., Wynter K., Kavangah S., Hosking S., Macdonald J. (2022). Evaluation of patient engagement (PE) using PCORI Engagement Rubric. Women and Birth, Vol. 35, Supp. 1, September, p. 8
Zaghmouri, N. (2022). Quand le soin sans gaspillage, le lean healthcare, s’appuie sur l’expérience patient. RIMHE : Revue Interdisciplinaire Management, Homme & Entreprise, 47,V11, pp. 90-101.
https://doi.org/10.3917/rimhe.047.0090
Upadhyay S., Bhandari N. (2022). » Do Patient Engagement Functionalities impact Quality Outcomes? The Mediating Role of EHR Presence« . Proceedings, https://doi.org/10.5465/AMBPP.2022.12220abstract
Pedersen J. F., Egilstrød B., Overgaard C., Petersen K. S. (2022). Public involvement in the planning, development and implementation of community health services : A scoping review of public involvement methods. Health & Social Care in the Community, 30(3), 809‑835. https://doi.org/10.1111/hsc.13528
Danish A. (2022). « Planning the Evaluation of Patient Engagement in the PriCare Research Program« . Canadian Journal of Program Evaluation
Fredriksson M. (2022). » Patient and public involvement in the build-up of COVID-19 testing in Sweden« . Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 25(2), pp. 541‑548.
Phillips R., Perraton L., Cridland K., Maloney S., Harris I. A., Malliaras P. (2021). « Patient knowledge of rotator cuff related shoulder pain condition and treatment and validation of a patient-reported knowledge survey ». Musculoskeletal Care, 19(4), pp.504‑514. https://doi.org/10.1002/msc.1547
Manupipatpong K. K., Tumin D., Roth C., Kim S. S., Tobias J. D., Raman V. T. (2022). « Improving pediatric patient engagement, outcomes, and satisfaction via an interactive perioperative teaching platform« . Paediatric Anaesthesia, 32(1), 74‑76. https://doi.org/10.1111/pan.14314
Syahnaz M.H., Idayu B.I., Nasrin J., Rafidah B., Shalisah S. (2021). « Exploring how patient engagement is initiated in diabetes care ». Malaysian Family Physician, suppl. Supplement 1; Vol. 16, p. 28.
Stoop P. L., Duran L. (2021). « Motivations, experiences, and aspirations in patient engagement of people living with metastatic cancer ». Patient Exprience Journal (PXJ). Volume 8, Issue 3 – 2021, pp. 136-142
Atkinson M.-K., Benneyan J.-C., Phillips R. S., Schiff G. D., Hunt L. S., Singer S. J. (2021). « Patient engagement in system redesign teams: a process of social identity. » J Health Organ Manag. Oct 26 ; ahead-of-print(ahead-of-print). doi: 10.1108/JHOM-02-2021-0064.
Bruneau C., Génolini J., Terral P. (2021). « Gérer et utiliser les asymétries relationnelles en éducation thérapeutique du patient : la coordination soignants-patients dans la conception d’un programme d’éducation thérapeutique en oncologie« . Revue française des affaires sociales,
pp. 143-163.
Baim-Lance A., Coren F., Brown M., Lever H., Tietz D., Agins B. (2021). « Building patient participation in quality of care through the healthcare stories project: a demonstration program in New-York state HIV clinics« . Patient Experience Journal, Vol. 8, Issue 2, pp. 84-93
Horn J. Allen S. V. A., Boehmer K. R., Pecina J. L. (2021). » Patient Voice and Mission: Why Do Patients Choose Family Medicine and What Do They Value?« . Journal of Patient Experience. Volume 8: 1-4. https://journals.sagepub.com/doi/full/10.1177/23743735211034037
Valentino L. A., Blanchette V., Negrier C., O’Mahony B., Bias V., Sannié T., Skinner M. W. (2021). « Personalising haemophilia management with shared decision making ». J Haem Pract 2021; 8(1), pp. 69-79 : doi: 10.17225/jhp00178
Hearn M., Fowler M., Worley S. C., Moss J. L. (2021). « Leveraging community engagement to increase the health literacy of youth in rural Pennsylvania : The ACHIEVE program« . The Journal of Rural Health : Official Journal of the American Rural Health Association and the National Rural Health Care Association. https://doi.org/10.1111/jrh.12634
Spach N. C., Thach S. B., Dellinger C. B., Ritter E. Q., Galvin S. L. (2021). « Using a Community Engagement Approach to Enhance Contraception Awareness in Rural Western North Carolina« . North Carolina Medical Journal, 82(6), 377‑383. https://doi.org/10.18043/ncm.82.6.377
Brown T. T., Hurley V. B., Rodriguez H. P. (2021). « Association of patient engagement strategies with utilisation and spending for musculoskeletal problems in the USA: a cross-sectional analysis of Medicare patients and physician practices« . BMJ Open, 11(11), e053121. https://doi.org/10.1136/bmjopen-2021-053121
Dy C. J., Brogan D. M., Rolf L., James A. S. (2021). « Being a patient the rest of my life’- The influence of patient participation during recovery after brachial plexus injury« . Journal of Hand Therapy : Official Journal of the American Society of Hand Therapists.
Faulkner S. D., Pittens C. A. C. M., Goedhart N. S., Davies E. H., Manning E., Diaz-Ponce A., Jose Vicente Edo M., Prieto-Remón L., Husain L., Huberman K., Boudes M., Subramaniam M. (2021). « Optimising Multi-stakeholder Practices in Patient Engagement : A Gap Analysis to Enable Focused Evolution of Patient Engagement in the Development and Lifecycle Management of Medicines« . Therapeutic Innovation & Regulatory Science, 55(6), pp. 1165‑1179.
Guan M., Han J. Y., Shah D. V., Gustafson D. H. (2021). « Exploring the Role of Social Support in Promoting Patient Participation in Health Care among Women with Breast Cancer« . Health Communication, 36 (13),
pp. 1581‑1589.
Kleefstra S., Leistikow I. (2021). « Turning patient engagement into the « new normal« . BMJ (Clinical Research Ed.), 375, n2695.
Mills J., Abel J., Kellehear A., Patel M. (2021). « Access to palliative care : The primacy of public health partnerships and community participation« . The Lancet. Public Health, 6(11), e791‑e792.
Atkinson M. K., Benneyan J. C., Phillips R. S., Schiff G. D., Hunt L. S., Singer S. J. (2021). « Patient engagement in system redesign teams : A process of social identity« . Journal of Health Organization and Management, ahead-of-print(ahead-of-print).
Tiemens, D. K., Nugteren, J., Leenders, E., Wingbermühle, E., Pittens, C. A. C. M., Draaisma, J. M. T. (2021). Patient engagement in the design of clinical research in Noonan syndrome spectrum disorders : A scoping review. Orphanet Journal of Rare Diseases, 16(1), 449. https://doi.org/10.1186/s13023-021-02083-x
Tivey, A., Huddar, P., Shotton, R., Cheese, I., Daniels, S., Lorigan, P., Lee J.- R. (2021). Patient engagement in melanoma research : From bench to bedside. Future Oncology (London, England), 17(28), 3705‑3716. https://doi.org/10.2217/fon-2020-1165
Wind, A., van der Linden, C., Hartman E., Siesling S., Van Harten W. (2021). Patient involvement in clinical pathway development, implementation and evaluation—A scoping review of international literature. Patient Education and Counseling.
https://doi.org/10.1016/j.pec.2021.10.007
Zibrowski E., Carr T., McDonald S., Thiessen H., van Dusen R., Goodridge D., Haver C., Marciniuk D., Stobart C., Verrall T., Groot G. (2021). A rapid realist review of patient engagement in patient-oriented research and health care system impacts : Part one. Research Involvement and Engagement, 7(1), 72.
https://doi.org/10.1186/s40900-021-00299-6
Aartsma-Rus A., Vroom E., O’Reilly, D. (2021). The Role of Patient Involvement When Developing Therapies. Nucleic Acid Therapeutics. https://doi.org/10.1089/nat.2021.0048
Ansmann L., Heuser C., Diekmann A., Schellenberger B., Biehl C., Danaei M., Eichler C., Heinz D., Hocke A., Malter W., Melekian B., Metin H., Mustea A., Palatty J., Peisker U., Petschat I., Ernstmann N. (2021). Patient participation in multidisciplinary tumor conferences : How is it implemented ? What is the patients’ role ? What are patients’ experiences? Cancer Medicine, 10(19), 6714‑6724.
https://doi.org/10.1002/cam4.4213
Atkinson M. K., Benneyan J. C., Phillips R. S., Schiff G. D., Hunt L. S., Singer S. J. (2021). Patient engagement in system redesign teams : A process of social identity. Journal of Health Organization and Management, ahead-of-print(ahead-of-print). https://doi.org/10.1108/JHOM-02-2021-0064
Case H., Williams D. D., Majidi S., Ferro D., Clements M. A., Patton S. R. (2021). Longitudinal associations between family conflict, parent engagement, and metabolic control in children with recent-onset type 1 diabetes. BMJ Open Diabetes Research & Care, 9(1).
https://doi.org/10.1136/bmjdrc-2021-002461
Chéhère B., Pernot J., Costes F. (2021). Physical activity and pulmonary rehabilitation. Revue des maladies respiratoires.
https://doi.org/10.1016/j.rmr.2021.09.004
Georgiou Delisle, T., D’Souza, N., Davies, B., Benton, S., Chen, M., Ward, H., & Abulafi, M. (2021). Faecal immunochemical test for suspected colorectal cancer symptoms : Patient survey of usability and acceptability. BJGP Open. https://doi.org/10.3399/BJGPO.2021.0102
Gunn A. H., Sorenson C., Greenup R. A. (2021). Navigating the high costs of cancer care : Opportunities for patient engagement. Future Oncology (London, England), 17(28), 3729‑3742. https://doi.org/10.2217/fon-2021-0341
Hahn-Goldberg S., Pariser P., Schwenk C., Boozary A. (2021). Opportunity to inform social needs within a hospital setting using data-driven patient engagement. BMJ Open Quality, 10(4).
https://doi.org/10.1136/bmjoq-2021-001540
Harvard S., Winsberg E., Symons J., Adibi A. (2021). Value judgments in a COVID-19 vaccination model : A case study in the need for public involvement in health-oriented modelling. Social Science & Medicine (1982), 286, 114323. https://doi.org/10.1016/j.socscimed.2021.114323
Jayakumar, P., Duckworth, E., & Bozic, K. J. (2021). Value-based Healthcare : Three Ways Healthcare Systems Can Get More Usage Out of Their Patient Engagement Tools. Clinical Orthopaedics and Related Research, 479(10), 2136‑2138.
https://doi.org/10.1097/CORR.0000000000001934
Knowles S. E., Allen D., Donnelly A., Flynn J., Gallacher K., Lewis A., McCorkle G., Mistry M., Walkington P., Brunton L. (2021). Participatory codesign of patient involvement in a Learning Health System : How can data-driven care be patient-driven care? Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13345
Kothawala S., Wang Y., Gupta S. K. (2021). Impact of Patient Engagement and Social Determinants of Health on Care of Eosinophilic Gastrointestinal Disorders (EGID) Patients. Journal of Pediatric Gastroenterology and Nutrition.
https://doi.org/10.1097/MPG.0000000000003318
Martinsson C., Uhlin F., Wenemark M., Eldh A. C. (2021). Preference-based patient participation for most, if not all : A cross-sectional study of patient participation amongst persons with end-stage kidney disease. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 24(5), 1833‑1841.
https://doi.org/10.1111/hex.13323
Merle R., Pison C., Logerot S., Deschaux C., Arnol N., Roustit M., Tamisier R., Pépin J. L., Borel J. C. (2021). Peer-driven intervention to help patients resume CPAP therapy following discontinuation : A multicentre, randomised clinical trial with patient involvement. BMJ Open, 11(10), e053996. https://doi.org/10.1136/bmjopen-2021-053996
Mills J., Abel J., Kellehear A., Patel M. (2021). Access to palliative care : The primacy of public health partnerships and community participation. The Lancet. Public Health. https://doi.org/10.1016/S2468-2667(21)00213-9
Murray M. S., Lee L. H. (2021). The future of oncology care requires integration of patient engagement and equity into practice. Future Oncology (London, England), 17(28), 3671‑3677.
https://doi.org/10.2217/fon-2021-0912
Paukkonen L., Oikarinen A., Kähkönen O., Kyngäs H. (2021). Patient participation during primary health-care encounters among adult patients with multimorbidity : A cross-sectional study. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 24(5), 1660‑1676.
https://doi.org/10.1111/hex.13306
Rawl S. M., Newhouse R. P. (2021). Advancing Methods for Patient and Community Engagement. Western Journal of Nursing Research, 43(10), 903‑904. https://doi.org/10.1177/01939459211027656
Sandhya Y. K., Khanna R. (2021). Community participation in demanding accountability for health systems strengthening. Indian Journal of Medical Ethics, VI(4), 279‑281.
https://doi.org/10.20529/IJME.2021.074
Whitehill L., Smith J., Colditz G., Le T., Kellner P., Pineda R. (2021). Socio-demographic factors related to parent engagement in the NICU and the impact of the SENSE program. Early Human Development, 163, 105486. https://doi.org/10.1016/j.earlhumdev.2021.105486
Akamike I. C., Okedo-Alex I. N., Alo C., Agu A. P., Uneke C. J., Ogbonnaya L. U. (2021). Effect of mobile-phone messaging on patient and health-worker knowledge and adherence to the isoniazid preventive therapy guideline in HIV clinics in Southeast, Nigeria. BMC Infectious Diseases, 21(1), 1080. https://doi.org/10.1186/s12879-021-06759-4
Goel K. M., Maxwell R. A., Cooley M. E., Rackett T. M., Yaklic J. L. (2021). Quality improvement : Patient education for management of hypertension in pregnancy. Hypertension in Pregnancy, 1‑8. https://doi.org/10.1080/10641955.2021.1981371
Gonzalez G., Vaculik K., Khalil C., Zektser Y., Arnold C. W., Almario C. V., Spiegel B. M. R., Anger J. T. (2021). Social media analytics of overactive bladder posts : What do patients know and want to know? International Urogynecology Journal, 32(10), 2729‑2736.
https://doi.org/10.1007/s00192-021-04686-1
Hansen A. K., Connors P., Donnelly-Hermosillo D., Full R., Hove A., Lanier H., Lent, D., Nation J., Tucker K. P., Ward J., Whitenack L., Zavaleta E. (2021). Biology Beyond the Classroom : Experiential Learning Through Authentic Research, Design, and Community Engagement. Integrative and Comparative Biology, 61(3), 926‑933.
https://doi.org/10.1093/icb/icab155
Harris W., Skuse K., Craig C. (2021). Understanding patient involvement in judging students’ communication skills in OSCEs : A medical student perspective. Medical Teacher, 1.
https://doi.org/10.1080/0142159X.2021.1996552
Khazanchi R., Keeler H., Strong S., Lyden E. R., Davis P., Grant B. K., Marcelin J. R. (2021). Building structural competency through community engagement. The Clinical Teacher, 18(5), 535‑541.
https://doi.org/10.1111/tct.13399
Mansell H., Rosaasen N., Wichart J., Mainra R., Shoker A., Hoffert M., Blackburn D. F., Liu J., Groot B., Trivedi P., Willenborg E., Amararajan M., Wu H., Afful A. (2021). A Randomized Controlled Trial of a Pretransplant Educational Intervention in Kidney Patients. Transplantation Direct, 7(10), e753.
https://doi.org/10.1097/TXD.0000000000001202
Manupipatpong K. K., Tumin D., Roth C., Kim S. S., Tobias J. D., Raman V. T. (2021). Improving pediatric patient engagement, outcomes, and satisfaction via an interactive perioperative teaching platform. Paediatric Anaesthesia. https://doi.org/10.1111/pan.14314
Marseille B. R., Commodore-Mensah Y., Davidson P. M., Baker D., D’Aoust R., Baptiste D.-L. (2021). Improving hypertension knowledge, medication adherence, and blood pressure control : A feasibility study. Journal of Clinical Nursing, 30(19‑20), 2960‑2967.
https://doi.org/10.1111/jocn.15803
Previti M., Prakash S., Garcia L. (2021). Assessing Knowledge of Opioid Misuse and Harm Reduction : A Community Partner Collaboration. Journal of Allied Health, 50(3), 229‑233.
Schwab C., Wadle N.-E., Knake S., Von Podewils F., Siebenbrodt K., Kohlhase K., Schulz J., Menzler K., Mann C., Rosenow F., Seifart C., Strzelczyk A. (2021). Patients’ knowledge about epilepsy-related risks, morbidity, and mortality : A multicenter cohort study from Germany. Epilepsy & Behavior : E&B, 124, 108343. https://doi.org/10.1016/j.yebeh.2021.108343
Wang, T., Huilgol, Y. S., Black, J., D’Andrea, C., James, J., Northrop, A., Belkora, J., & Esserman, L. J. (2021). Pre-Appointment Nurse Navigation : Patient-Centered Findings From a Survey of Patients With Breast Cancer. Clinical Journal of Oncology Nursing, 25(5), E57‑E62.
https://doi.org/10.1188/21.CJON.E57-E62
Cadel L., Marcinow M., Sandercock J., Dowedoff P., Guilcher S. J. T., Maybee A., Law S., Kuluski K. (2021). A scoping review of patient engagement activities during COVID-19 : More consultation, less partnership. PloS One, 16(9), e0257880.
https://doi.org/10.1371/journal.pone.0257880
Carroll P., Dervan A., Maher A., McCarthy C., Woods I., Kavanagh R., Beirne C., Harte G., O’Flynn D., Murphy P., Quinlan J., Holton A., Casey S., Moriarty F., Smith É., O’Brien F. J., Flood M. (2021). Patient and Public Involvement (PPI) in preclinical research : A scoping review protocol. HRB Open Research, 4, 61.
https://doi.org/10.12688/hrbopenres.13303.2
Cavaller-Bellaubi M., Faulkner S. D., Teixeira B., Boudes M., Molero E., Brooke N., McKeaveney L., Southerton J., Vicente M. J., Bertelsen N., García-Burgos J., Pirard V., Reid K., Ferrer E. (2021). Sustaining Meaningful Patient Engagement Across the Lifecycle of Medicines : A Roadmap for Action. Therapeutic Innovation & Regulatory Science,
55(5), 936‑953. https://doi.org/10.1007/s43441-021-00282-z
Modigh, A., Sampaio, F., Moberg, L., Fredriksson, M. (2021). The impact of patient and public involvement in health research versus healthcare : A scoping review of reviews. Health Policy (Amsterdam, Netherlands), 125(9), 1208‑1221.
https://doi.org/10.1016/j.healthpol.2021.07.008
Scholz B., Bevan A. (2021). Toward more mindful reporting of patient and public involvement in healthcare. Research Involvement and Engagement, 7(1), 61. https://doi.org/10.1186/s40900-021-00308-8
Sine S., de Bruin A., Getz K. (2021). Patient Engagement Initiatives in Clinical Trials : Recent Trends and Implications. Therapeutic Innovation & Regulatory Science, 55(5), 1059‑1065. https://doi.org/10.1007/s43441-021-00306-8
Ahmedien D. A. M. (2021). New-media arts-based public engagement projects could reshape the future of the generative biology. Medical Humanities, 47(3), 283‑291. https://doi.org/10.1136/medhum-2020-011862
Graffigna G. (2021). Patient engagement as a crucial asset of preclinical biomedical research. EBioMedicine, 71, 103528
. https://doi.org/10.1016/j.ebiom.2021.103528
Greenwood K., Robertson S., Vogel E., Vella C., Ward T., McGourty A., Sacadura C., Hardy A., Rus-Calafell M., Collett N., Emsley R., Freeman D., Fowler D., Kuipers E., Bebbington P., Dunn G., Garety P. (2021). The impact of Patient and Public Involvement in the SlowMo study : Reflections on peer innovation. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13362
Leader A. E., Aplin A. E. (2021). From the Community to the Bench and Back Again : The Value of Patient and Community Engagement in Cancer Research. Cancer Discovery, 11(9), 2135‑2138.
https://doi.org/10.1158/2159-8290.CD-21-0693
Nicholas, O. J., Joseph, O., Keane, A., Cleary, K., Campbell, S. H., Gwynne, S. H., Crosby, T., Radhakrishna, G., Hawkins, M. A. (2021). Patient and Public Involvement Refines the Design of ProtOeus : A Proposed Phase II Trial of Proton Beam Therapy in Oesophageal Cancer. The Patient, 14(5), 545‑553. https://doi.org/10.1007/s40271-020-00487-8
Osborne J., Paget J., Giles-Vernick T., Kutalek R., Napier D., Baliatsas C., Dückers M. (2021). Community engagement and vulnerability in infectious diseases : A systematic review and qualitative analysis of the literature. Social Science & Medicine (1982), 284, 114246. https://doi.org/10.1016/j.socscimed.2021.114246
Paddock K., Woolfall K., Frith L., Watkins M., Gamble C., Welters I., Young B. (2021). Strategies to enhance recruitment and consent to intensive care studies : A qualitative study with researchers and patient-public involvement contributors. BMJ Open, 11(9), e048193. https://doi.org/10.1136/bmjopen-2020-048193
Smith A. B., Lee J. R., Lawrence S. O., Lavallee D. C., Chisolm S., MacLean D. B., Louwers R. K., Wolff E. M., Kessler L. G., Follmer K. M., Gore J. L. (2021). Patient and public involvement in the design and conduct of a large, pragmatic observational trial to investigate recurrent, high-risk non-muscle-invasive bladder cancer. Cancer.
https://doi.org/10.1002/cncr.33897
Tucker J. D., Fu H., Ong J. J. (2021). ’Nothing about us without us’ : Public engagement to inform sexual health research and services. Sexually Transmitted Infections. https://doi.org/10.1136/sextrans-2021-055201
Becker C., Gamp M., Schuetz P., Beck K., Vincent A., Hochstrasser S., Metzger K., Widmer M., Thommen E., Mueller B., Fux C. A., Leuppi J. D., Schaefert R., Langewitz W., Trendelenburg M., Breidthardt T., Eckstein J., Osthoff M., Bassetti S., Hunziker S. (2021). Effect of Bedside Compared With Outside the Room Patient Case Presentation on Patients’ Knowledge About Their Medical Care : A Randomized, Controlled, Multicenter Trial. Annals of Internal Medicine, 174(9), 1282‑1292
https://doi.org/10.7326/M21-0909
Braester A., Shaoul E., Mizrachi O., Akria L., Shelev L., Barhoum M. (2021). Patient Involvement in the Transfusion Decision-Making Can Change Patient Blood Management Practice for Better or Worse. Acta Haematologica, 1‑4.
https://doi.org/10.1159/000518947
Chutiyami M., Wyver S., Amin J. (2021). Parent engagement with the New South Wales child health home-based record : A cross-sectional survey and a retrospective chart review. Child: Care, Health and Development, 47(5), 635‑644.
https://doi.org/10.1111/cch.12871
Cohan, J. N., Ozanne, E. M., Hofer, R. K., Kelly, Y. M., Kata, A., Larsen, C., Finlayson E. (2021). Ileostomy or ileal pouch-anal anastomosis for ulcerative colitis : Patient participation and decisional needs. BMC Gastroenterology, 21(1), 347. https://doi.org/10.1186/s12876-021-01916-0
DeSai C., Janowiak K., Secheli B., Phelps E., McDonald S., Reed G., Blomkalns A. (2021). Empowering patients : Simplifying discharge instructions. BMJ Open Quality, 10(3). https://doi.org/10.1136/bmjoq-2021-001419
Diekmann A., Schellenberger B., Reck S., Heuser C., Geiser F., Wirtz M., Ansmann L., Ernstmann N. (2021). Is patient participation in multidisciplinary tumor conferences associated with their fear of progression? Psycho-Oncology, 30(9), 1572‑1581.
https://doi.org/10.1002/pon.5733
Fredriksson M., Modigh A. (2021). Patient involvement at the managerial level : The effectiveness of a patient and family advisory council at a regional cancer centre in Sweden. BMC Health Services Research, 21(1), 1011. https://doi.org/10.1186/s12913-021-07026-7
Iversen B. R., Løkke A., Bregnballe V., Rodkjaer L. Ø. (2021). Does affiliation to a cross-sectorial lung team impact well-being, health-related quality of life, symptoms of anxiety and depression and patient involvement in patients with COPD? A randomised controlled trial. Scandinavian Journal of Caring Sciences. https://doi.org/10.1111/scs.13034
Kunneman M., Branda M. E., Ridgeway J. L., Tiedje K., May C. R., Linzer M., Inselman J., Buffington A. L. H., Coffey J., Boehm D., Deming J., Dick S., Van Houten H., LeBlanc A., Liesinger J., Lima J., Nordeen J., Pencille L., Poplau S., Shah N. D. (2021). Making sense of diabetes medication decisions : A mixed methods cluster randomized trial using a conversation aid intervention. Endocrine, 1‑15. https://doi.org/10.1007/s12020-021-02861-4
Mehawej J., Saczynski J., Abu H. O., Gagnier M., Bamgbade B. A., Lessard D., Trymbulak K., Saleeba C., Kiefe C. I., Goldberg R. J., McManus D. D. (2021). Factors Associated With Patient Engagement in Shared Decision-Making for Stroke Prevention Among Older Adults with Atrial Fibrillation. Canadian Geriatrics Journal : CGJ, 24(3), 174‑183.
https://doi.org/10.5770/cgj.24.475
Meier S., Kasting M. L., Liu S. S., DeMaria A. L. (2021). Shared decision-making among non-physician healthcare professionals : Enhancing patient involvement in women’s reproductive health in community healthcare settings. Patient Education and Counseling, 104(9), 2304‑2316. https://doi.org/10.1016/j.pec.2021.02.032
Robin, G., Brown, E., Davis, C.-A., Bird, L., Wilson, L., Halperin, R., Brundage, M., Croke, J., Harper, C., Giuliani, M., Caissie, A. (2021). Patient Engagement : An Assessment of Canadian Radiotherapy Programs’ Current Practices, Perceived Barriers, and Facilitators. Journal of Cancer Education : The Official Journal of the American Association for Cancer Education.
https://doi.org/10.1007/s13187-021-02049-4
Sferra, S. R., Cheng, J. S., Boynton, Z., DiSesa, V., Kaiser, L. R., Ma, G. X., Erkmen, C. P. (2021). Aiding shared decision making in lung cancer screening : Two decision tools. Journal of Public Health (Oxford, England), 43(3), 673‑680. https://doi.org/10.1093/pubmed/fdaa063
Shelswell, J., Patel, V. A., Barber, S. (2021). The effectiveness of interventions to increase patient involvement in decision-making in orthodontics : A systematic review. Journal of Orthodontics, 14653125211048202. https://doi.org/10.1177/14653125211048202
Tobiano, G., Jerofke-Owen, T., Marshall, A. P. (2021). Promoting patient engagement : A scoping review of actions that align with the interactive care model. Scandinavian Journal of Caring Sciences, 35(3), 722‑741. https://doi.org/10.1111/scs.12914
Burčul, V., Chartrand, J., Balasa, R., Moreau, K., Eady, K., Chartrand, M. (2021). An exploration of nursing students’ and clinical instructors’ perceptions of patient and parent involvement in the assessment of nursing students during pediatric clinical placements : A qualitative study. Nurse Education in Practice, 56, 103195. https://doi.org/10.1016/j.nepr.2021.103195
Mansell, H., Rosaasen, N., Wichart, J., Mainra, R., Shoker, A., Hoffert, M., Blackburn, D. F., Liu, J., Groot, B., Trivedi, P., Willenborg, E., Amararajan, M., Wu, H., Afful, A. (2021). A Randomized Controlled Trial of a Pretransplant Educational Intervention in Kidney Patients. Transplantation Direct, 7(10), e753. https://doi.org/10.1097/TXD.0000000000001202
Moult, A., McKinley, R. K., Yeates, P. (2021). Understanding patient involvement in judging students’ communication skills in OSCEs. Medical Teacher, 1‑9. https://doi.org/10.1080/0142159X.2021.1915467
Rahman, D. S., Kripalani, M. S., Keegan, M. E., Sparks, M. A., Amdur, D. R., Moawad, D. G., Sheth, D. S., Klebanoff, D. J. (2021). An Educational Video’s Impact on the Induction of Labor Experience : A Randomized Controlled Trial : Educational Video’s Impact on IOL, RCT. American Journal of Obstetrics & Gynecology MFM, 100495. https://doi.org/10.1016/j.ajogmf.2021.100495
Knapp, P. W., Keller, R. A., Mabee, K. A., Pillai, R., Frisch, N. B. (2021). Quantifying Patient Engagement in Total Joint Arthroplasty Using Digital Application-Based Technology. The Journal of Arthroplasty, 36(9), 3108‑3117.
https://doi.org/10.1016/j.arth.2021.04.022
Shpigelman, C. N., Tal, A., Zisman-Ilani, Y. (2021). Digital Community Inclusion of Individuals With Serious Mental Illness : A National Survey to Map Digital Technology Use and Community Participation Patterns in the Digital Era. JMIR Mental Health, 8(9), e28123. https://doi.org/10.2196/28123
Tan, S. H. X., Lee, C. K. J., Yong, C. W., Ding, Y. Y. (2021). Scoping review : Facilitators and barriers in the adoption of teledentistry among older adults. Gerodontology. https://doi.org/10.1111/ger.12588
Davies-Teye, B. B., Medeiros, M., Chauhan, C., Baquet, C. R., Mullins, C. D. (2021). Pragmatic patient engagement in designing pragmatic oncology clinical trials. Future Oncology (London, England). https://doi.org/10.2217/fon-2021-0556
Feldman, D., Kruger, P., Delbecque, L., Duenas, A., Bernard-Poenaru, O., Wollenschneider, S., Hicks, N., Reed, J. A., Sargeant, I., Pakarinen, C., Hamoir, A.-M. (2021). Co-creation of practical « how-to guides » for patient engagement in key phases of medicines development-from theory to implementation. Research Involvement and Engagement, 7(1), 57.
https://doi.org/10.1186/s40900-021-00294-x
Fletcher, J., Swift, A., Hewison, M., Cooper, S. C. (2021). Patient and public involvement in research design and oversight. Nurse Researcher. https://doi.org/10.7748/nr.2021.e1786
Pedersen, J. F., Egilstrød, B., Overgaard, C., Petersen, K. S. (2021). Public involvement in the planning, development and implementation of community health services : A scoping review of public involvement methods. Health & Social Care in the Community.
https://doi.org/10.1111/hsc.13528
Stocker, R., Brittain, K., Spilsbury, K., Hanratty, B. (2021). Patient and public involvement in care home research : Reflections on the how and why of involving patient and public involvement partners in qualitative data analysis and interpretation. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 24(4), 1349‑1356. https://doi.org/10.1111/hex.13269
Turin, T. C., Chowdhury, N., Haque, S., Rumana, N., Rahman, N., Lasker, M. A. A. (2021). Meaningful and deep community engagement efforts for pragmatic research and beyond : Engaging with an immigrant/racialised community on equitable access to care. BMJ Global Health, 6(8), e006370. https://doi.org/10.1136/bmjgh-2021-006370
Doble, E., Scowcroft, H. (2021). Patient partnership : A roundup from the BMJ patient advisory panel. BMJ (Clinical Research Ed.), 374, n1773. https://doi.org/10.1136/bmj.n1773
Fox, G., Fergusson, D. A., Daham, Z., Youssef, M., Foster, M., Poole, E., Sharif, A., Richards, D. P., Hendrick, K., Mendelson, A. A., Macala, K. F., Monfaredi, Z., Montroy, J., Fiest, K. M., Presseau, J., Lalu, M. M. (2021). Patient engagement in preclinical laboratory research : A scoping review.
EBioMedicine, 70,103484.https://doi.org/10.1016/j.ebiom.2021.103484
Graffigna, G. (2021). Patient engagement as a crucial asset of preclinical biomedical research. EBioMedicine, 71, 103528.
https://doi.org/10.1016/j.ebiom.2021.103528
Gray, D. M. 2nd, Nolan, T. S., Gregory, J., Joseph, J. J. (2021). Diversity in clinical trials : An opportunity and imperative for community engagement. The Lancet. Gastroenterology & Hepatology, 6(8), 605‑607.https://doi.org/10.1016/S2468-1253(21)00228-4
Kaisler, R. E., Kulnik, S. T., Klager, E., Kletecka-Pulker, M., Schaden, E., Stainer-Hochgatterer, A. (2021). Introducing patient and public involvement practices to healthcare research in Austria : Strategies to promote change at multiple levels. BMJ Open, 11(8), e045618. https://doi.org/10.1136/bmjopen-2020-045618
Merker, V. L., Lessing, A. J., Moss, I., Hussey, M., Oberlander, B., Rose, T., Thalheimer, R., Wirtanen, T., Wolters, P. L., Gross, A. M., Plotkin, S. R. (2021). Enhancing Neurofibromatosis Clinical Trial Outcome Measures Through Patient Engagement : Lessons From REiNS. Neurology, 97(7 Suppl 1), S4‑S14. https://doi.org/10.1212/WNL.0000000000012430
Ogunrin, O., Gabbay, M., Woolfall, K., Frith, L. (2021). Community engagement in genomic research : Proposing a strategic model for effective participation of indigenous communities. Developing World Bioethics. https://doi.org/10.1111/dewb.12329
Polanco, A., Al-Saadi, R., Tugnait, S., Scobie, N., Pritchard-Jones, K. (2021). Setting international standards for patient and parent involvement and engagement in childhood, adolescent and young adult cancer research : A report from a European Collaborative Workshop. Cancer Reports (Hoboken, N.J.), e1523. https://doi.org/10.1002/cnr2.1523
Teodorowski, P., Jones, E., Tahir, N., Ahmed, S., Frith, L. (2021). Public involvement and engagement in big data research : Protocol for a scoping review and a systematic review of delivery and effectiveness of strategies for involvement and engagement. BMJ Open, 11(8), e050167. https://doi.org/10.1136/bmjopen-2021-050167
Alokozai, A., Bernstein, D. N., Samuel, L. T., Kamath, A. F. (2021). Patient Engagement Approaches in Total Joint Arthroplasty : A Review of Two Decades. Journal of Patient Experience, 8, 23743735211036524. https://doi.org/10.1177/23743735211036525
Anna, S., Catharina, F., Ann-Charlotte, F. (2021). The core of patient-participation in the Intensive Care Unit : The patient’s views. Intensive & Critical Care Nursing, 103119. https://doi.org/10.1016/j.iccn.2021.103119
Ansmann, L., Heuser, C., Diekmann, A., Schellenberger, B., Biehl, C., Danaei, M., Eichler, C., Heinz, D., Hocke, A., Malter, W., Melekian, B., Metin, H., Mustea, A., Palatty, J., Peisker, U., Petschat, I., Ernstmann, N. (2021). Patient participation in multidisciplinary tumor conferences : How is it implemented ? What is the patients’ role ? What are patients’ experiences? Cancer Medicine. https://doi.org/10.1002/cam4.4213
Baddeley, E., Torrens-Burton, A., Newman, A., Nelson, A., Pease, N., Nelson, R., Noble, S. (2021). A mixed-methods study to evaluate a patient-designed tool to reduce harm from cancer-associated thrombosis : The EMPOWER study. Research and Practice in Thrombosis and Haemostasis, 5(5), e12545. https://doi.org/10.1002/rth2.12545
Chegini, Z., Arab-Zozani, M., Shariful Islam, S. M., Tobiano, G., Abbasgholizadeh Rahimi, S. (2021). Barriers and facilitators to patient engagement in patient safety from patients and healthcare professionals’ perspectives : A systematic review and meta-synthesis. Nursing Forum. https://doi.org/10.1111/nuf.12635
de Graaff, B., Kleinhout-Vliek, T., Van de Bovenkamp, H. (2021). In the works : Patient and public involvement and engagement in healthcare decision-making. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy https://doi.org/10.1111/hex.13339
Fareed, N., Southerland, L. T., Rao, B. M., Sieck, C. J. (2021). Geriatric assistive devices improve older patient engagement and clinical care in an emergency department. The American Journal of Emergency Medicine, 46, 656‑658. https://doi.org/10.1016/j.ajem.2020.07.073
Grimes, T. C. (2021). Is it time for greater patient involvement to enhance transitional medication safety? BMJ Quality & Safety.
https://doi.org/10.1136/bmjqs-2021-014116
Hipp, K., Repo-Tiihonen, E., Kuosmanen, L., Katajisto, J., Kangasniemi, M. (2021). Patient participation in pro re nata medication in forensic psychiatric care : A nursing document analysis. Journal of Psychiatric and Mental Health Nursing, 28(4), 611‑621.
https://doi.org/10.1111/jpm.12706
Kirsch, V., Matthes, J. (2021). Aspects of Medication and Patient participation-an Easy guideLine (AMPEL). A conversation guide increases patients’ and physicians’ satisfaction with prescription talks. Naunyn-Schmiedeberg’s Archives of Pharmacology, 394(8), 1757‑1767. https://doi.org/10.1007/s00210-021-02107-0
Martinsson, C., Uhlin, F., Wenemark, M., Eldh, A. C. (2021). Preference-based patient participation for most, if not all : A cross-sectional study of patient participation amongst persons with end-stage kidney disease. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13323
Miller, P. R., Guldager, R., Herling, S. F. (2021). Nurses’ Perceptions of Patient Participation in the Postanesthesia Care Unit-A Qualitative Focus Group Study. Journal of Perianesthesia Nursing : Official Journal of the American Society of PeriAnesthesia Nurses. https://doi.org/10.1016/j.jopan.2021.02.005
Murray, M. S., Lee, L. H. (2021). The future of oncology care requires integration of patient engagement and equity into practice. Future Oncology (London, England). https://doi.org/10.2217/fon-2021-0912
Newman, B., Joseph, K., Chauhan, A., Seale, H., Li, J., Manias, E., Walton, M., Mears, S., Jones, B., Harrison, R. (2021). Do patient engagement interventions work for all patients ? A systematic review and realist synthesis of interventions to enhance patient safety. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13343
Patel, K. K., Decker, C., Pacheco, C. M., Fuss, C., Boda, I., Gosch, K. L., McGhie, A. I., Thompson, R. C., Sperry, B. W., Bateman, T. M., Spertus, J. A. (2021). Development and Piloting of a Patient-Centered Report Design for Stress Myocardial Perfusion Imaging Results. JAMA Network Open, 4(8), e2121011.
https://doi.org/10.1001/jamanetworkopen.2021.21011
Pokhilenko, I., van Esch, T. E. M., Brabers, A. E. M., De Jong, J. D. (2021). Relationship between trust and patient involvement in medical decision-making : A cross-sectional study. PloS One, 16(8), e0256698.
https://doi.org/10.1371/journal.pone.0256698
Rauff Søndergaard, S., Ellekjær, L. B., Bechmann, T., Offersen, B. V., Nielsen, M. H., Møller, M., Berry, L. L., Zachariae, R., Dahl Steffensen, K. (2021). Shared decision making with breast cancer patients : Impact on patient engagement and fear of recurrence. Protocol for a Danish randomized trial in radiotherapy (DBCG RT SDM). Acta Oncologica (Stockholm, Sweden), 60(8), 1032‑1037.
https://doi.org/10.1080/0284186X.2021.1921261
Riddle, D. L., Sando, T., Tarver, T., Slover, J., Sierra, R. J., Brito, J. P., Montori, V. M. (2021). Shared Decision-Making Applied to Knee Arthroplasty : A Systematic Review of Randomized Trials. Arthritis Care & Research, 73(8), 1125‑1133. https://doi.org/10.1002/acr.24240
Sauers-Ford, H., Statile, A. M., Auger, K. A., Wade-Murphy, S., Gold, J. M., Simmons, J. M., Shah, S. S. (2021). Short-term Focused Feedback : A Model to Enhance Patient Engagement in Research and Intervention Delivery. Medical Care, 59(Suppl 4), S364‑S369.
https://doi.org/10.1097/MLR.0000000000001588
Ting, Y. Y., Reid, J. L., Treloar, E., Lee, W. S. B., Tee, J. Y., Cong, W. J. P., Peng, D., Edwards, S., Ey, J., Edwardes, N., Granchi, N., Maddern, G. J. (2021). The doctor will see you now : Eye gaze, conversation and patient engagement in the surgical outpatient clinic. An Australian observational cross-sectional study. ANZ Journal of Surgery.
https://doi.org/10.1111/ans.17163
Treichler, E. B. H., Rabin, B. A., Cohen, A. N., Light, G. A. (2021). How Shared Is Shared Decision Making? Reaching the Full Potential of Patient-Clinician Collaboration in Mental Health. Harvard Review of Psychiatry. https://doi.org/10.1097/HRP.0000000000000304
Wärdig, R., Olofsson, F., Eldh, A. C. (2021). Conceptualizing patient participation in psychiatry : A survey describing the voice of patients in outpatient care. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 24(4), 1443‑1449. https://doi.org/10.1111/hex.13285
Choong, T. L., Lim, Z. J., Ho, A. G. T., Goh, M. L. (2021). Increasing patient participation in hand hygiene practices in adult surgical wards in a tertiary institution : A best practice implementation project. JBI Evidence Implementation.
https://doi.org/10.1097/XEB.0000000000000290
Savarese, M., Sapienza, M., Acquati, G. M., Nurchis, M. C., Riccardi, M. T., Mastrilli, V., D’Elia, R., Graps, E. A., Graffigna, G., Damiani, G. (2021). Educational Interventions for Promoting Food Literacy and Patient Engagement in Preventing Complications of Type 2 Diabetes : A Systematic Review. Journal of Personalized Medicine, 11(8). https://doi.org/10.3390/jpm11080795
Yu, R., Hanley, B., Denegri, S., Ahmed, J., McNally, N. J. (2021). Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK. BMJ Open, 11(8), e047995. https://doi.org/10.1136/bmjopen-2020-047995
Will, M., Mascherbauer, J. (2021). Patient engagement in cardiology-nice or necessary? Wiener Klinische Wochenschrift, 133(15‑16), 747‑749. https://doi.org/10.1007/s00508-021-01929-5
Kearns, C., Eathorne, A., Semprini, A., Braithwaite, I., Beasley, R. (2021). Public engagement with clinical research on social media; which visual medium works best? A 5-year retrospective analysis. Journal of Visual Communication in Medicine, 1‑9.
https://doi.org/10.1080/17453054.2021.1950525
Kirkland, E., Schumann, S. O., Schreiner, A., Heincelman, M., Zhang, J., Marsden, J., Mauldin, P., Moran, W. P. (2021). Patient Demographics and Clinic Type Are Associated With Patient Engagement Within a Remote Monitoring Program. Telemedicine Journal and E-Health : The Official Journal of the American Telemedicine Association, 27(8), 843‑850.
https://doi.org/10.1089/tmj.2020.0535
Tai-Seale, M., Rosen, R., Ruo, B., Hogarth, M., Longhurst, C. A., Lander, L., Walker, A. L., Stults, C. D., Chan, A., Mazor, K., Garber, L., Millen, M. (2021). Implementation of Patient Engagement Tools in Electronic Health Records to Enhance Patient-Centered Communication : Protocol for Feasibility Evaluation and Preliminary Results. JMIR Research Protocols, 10(8), e30431. https://doi.org/10.2196/30431
van Leersum, C. M., Bults, M., Sloof, M., Pouwe, F., van Manen, J. G., Konijnendijk, A. A. J. (2021). Patient participation in the development and application of eHealth. TSG : tijdschrift voor gezondheidswetenschappen, 1‑10. https://doi.org/10.1007/s12508-021-00313-y
Zidaru, T., Morrow, E. M., & Stockley, R. (2021). Ensuring patient and public involvement in the transition to AI-assisted mental health care : A systematic scoping review and agenda for design justice. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 24(4), 1072‑1124.
https://doi.org/10.1111/hex.13299
Santesso, N., Wiercioch, W., Barbara, A. M., Dietl, H., Schünemann, H. J. (2021). Focus groups and interviews with the public led to the development of a template for a GRADE plain language recommendation. Journal of Clinical Epidemiology.
https://doi.org/10.1016/j.jclinepi.2021.09.018
Al-Janabi, H., Coles, J., Copping, J., Dhanji, N., McLoughlin, C., Murphy, J., Nicholls, J. (2021). Patient and Public Involvement (PPI) in Health Economics Methodology Research : Reflections and Recommendations. The Patient, 14(4), 421‑427.
https://doi.org/10.1007/s40271-020-00445-4
Anie, K. A., Olayemi, E., Paintsil, V., Owusu-Dabo, E., Adeyemo, T. A., Sani, M. U., Galadanci, N. A., Nnodu, O., Tluway, F., Adjei, D. N., Mensah, P., Sarfo-Antwi, J., Nwokobia, H., Gambo, A., Benjamin, A., Salim, A., Osae-Larbi, J. A., Ofori-Acquah, S. F. (2021). Sickle Cell Disease Genomics of Africa (SickleGenAfrica) Network : Ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria and Tanzania. BMJ Open, 11(7), e048208.
https://doi.org/10.1136/bmjopen-2020-048208
Ayton, D., Braaf, S., Jones, A., Teede, H., Gardam, M., Bergmeier, H., Skouteris, H. (2021). Barriers and enablers to consumer and community involvement in research and healthcare improvement : Perspectives from consumer organisations, health services and researchers in Melbourne, Australia. Health & Social Care in the Community.
https://doi.org/10.1111/hsc.13515
Barot, E., Kjaer, M.-B. N., Collet, M. O., Cresoli, E., Rasmussen, B. S., Estrup, S., Mortensen, C. B., Vesterlund, G. K., Sivapalan, P., Anton, C. T., Bruun, C. R. L., Poulsen, L. M., Møller, M. H., Perner, A., Granholm, A. (2021). Patient and public involvement in contemporary large intensive care trials : Protocol for a meta-epidemiological study. Acta Anaesthesiologica Scandinavica. https://doi.org/10.1111/aas.13953
Bichara, D. B., Dagher, Z. R., Fang, H. (2021). What do COVID-19 Tweets Reveal about Public Engagement with Nature of Science? Science & Education, 1‑31. https://doi.org/10.1007/s11191-021-00233-y
Birkeland, S., Bismark, M., Barry, M. J., Möller, S. (2021). Does greater patient involvement in healthcare decision-making affect malpractice complaints ? A large case vignette survey. PloS One, 16(7), e0254052.
https://doi.org/10.1371/journal.pone.0254052
Carlisle, D. P., Feetham, P. M., Wright, M. J., Teagle, D. A. H. (2021). Public engagement with emerging technologies : Does reflective thinking affect survey responses? Public Understanding of Science (Bristol, England), 9636625211029438.
https://doi.org/10.1177/09636625211029438
Cheung, C. K., Tucker-Seeley, R., Davies, S., Gilman, M., Miller, K. A., Lopes, G., Betz, G. D., Katerere-Virima, T., Helbling, L. E., Thomas, B. N., Lewis, M. A. (2021). A call to action : Antiracist patient engagement in adolescent and young adult oncology research and advocacy. Future Oncology (London, England). https://doi.org/10.2217/fon-2020-1213
Clearfield, E., Tambor, E., Janssen, E. M., Messner, D. A. (2021). Increasing the Patient-Centeredness of Health Economics and Outcomes Research Through Patient Engagement in Core Outcome Set Development. The Patient, 14(4), 413‑420.
https://doi.org/10.1007/s40271-020-00424-9
Codsi, M.-P., Karazivan, P., Rouly, G., Leclaire, M., Boivin, A. (2021). Changing relationships : How does patient involvement transform professional identity ? An ethnographic study. BMJ Open, 11(7), e045520. https://doi.org/10.1136/bmjopen-2020-045520
Cukier, A. (2021). Patient partnership falling to wayside in COVID-19 research rush. CMAJ : Canadian Medical Association Journal = Journal de l’Association Medicale Canadienne, 193(27), E1054‑E1055.
https://doi.org/10.1503/cmaj.1095950
Davis, K. F., Loos, J. R., Boland, M. G. (2021). Five Years and Moving Forward : A Successful Joint Academic-Practice Public Partnership to Improve the Health of Hawaii’s Schoolchildren. The Journal of School Health, 91(7), 584‑591. https://doi.org/10.1111/josh.13034
de Looper, M., van Weert, J. C. M., Schouten, B. C., Bolle, S., Belgers, E. H. J., Eddes, E. H., Smets, E. M. A. (2021). The Influence of Online Health Information Seeking Before a Consultation on Anxiety, Satisfaction, and Information Recall, Mediated by Patient Participation : Field Study. Journal of Medical Internet Research, 23(7), e23670.
https://doi.org/10.2196/23670
den Broeder, L., South, J., Rothoff, A., Bagnall, A.-M., Azarhoosh, F., van der Linden, G., Bharadwa, M., & Wagemakers, A. (2021). Community engagement in deprived neighbourhoods during the COVID-19 crisis : Perspectives for more resilient and healthier communities. Health Promotion International. https://doi.org/10.1093/heapro/daab098
Denegri, S., Starling, B. (2021). COVID-19 and patient engagement in health research : What have we learned? CMAJ : Canadian Medical Association Journal = Journal de l’Association Medicale Canadienne, 193(27), E1048‑E1049.
https://doi.org/10.1503/cmaj.210998
Ekezie, W., Routen, A., Denegri, S., Khunti, K. (2021). Patient and public involvement for ethnic minority research : An urgent need for improvement. Journal of the Royal Society of Medicine, 114(7), 347‑350. https://doi.org/10.1177/0141076821994274
Fotheringham, J., Barnes, T., Dunn, L., Lee, S., Ariss, S., Young, T., Walters, S. J., Laboi, P., Henwood, A., Gair, R., & Wilkie, M. (2021). A breakthrough series collaborative to increase patient participation with hemodialysis tasks : A stepped wedge cluster randomised controlled trial. PloS One, 16(7), e0253966.
https://doi.org/10.1371/journal.pone.0253966
Fox, G., Fergusson, D. A., Daham, Z., Youssef, M., Foster, M., Poole, E., Sharif, A., Richards, D. P., Hendrick, K., Mendelson, A. A., Macala, K. F., Monfaredi, Z., Montroy, J., Fiest, K. M., Presseau, J., & Lalu, M. M. (2021). Patient engagement in preclinical laboratory research : A scoping review. EBioMedicine, 70, 103484. https://doi.org/10.1016/j.ebiom.2021.103484
Goulao, B., Bruhn, H., Campbell, M., Ramsay, C., Gillies, K. (2021). Patient and public involvement in numerical aspects of trials (PoINT) : Exploring patient and public partners experiences and identifying stakeholder priorities. Trials, 22(1), 499.
https://doi.org/10.1186/s13063-021-05451-x
Graff, V., Clapp, J. T., Heins, S. J., Chung, J. J., Muralidharan, M., Fleisher, L. A., Elkassabany, N. M. (2021). Patient Involvement in Anesthesia Decision-making : A Qualitative Study of Knee Arthroplasty. Anesthesiology, 135(1), 111‑121.
https://doi.org/10.1097/ALN.0000000000003795
Gunn, A. H., Sorenson, C., & Greenup, R. A. (2021). Navigating the high costs of cancer care : Opportunities for patient engagement. Future Oncology (London, England). https://doi.org/10.2217/fon-2021-0341
Gunn, C. J., Bertelsen, N., Regeer, B. J., & Schuitmaker-Warnaar, T. J. (2021). Valuing patient engagement : Reflexive learning in evidence generation practices for health technology assessment. Social Science & Medicine (1982), 280, 114048.
https://doi.org/10.1016/j.socscimed.2021.114048
Heumann, M., Röhnsch, G., Hämel, K. (2021). Primary healthcare nurses’ involvement in patient and community participation in the context of chronic diseases : An integrative review. Journal of Advanced Nursing. https://doi.org/10.1111/jan.14955
Hoodbhoy, Z., Sheikh, S. S., Qureshi, R., Memon, J., Raza, F., Kinshella, M.-L. W., Bone, J. N., Vidler, M., Sharma, S., Payne, B. A., Magee, L. A., von Dadelszen, P., Bhutta, Z. A. (2021). Role of community engagement in maternal health in rural Pakistan : Findings from the CLIP randomized trial. Journal of Global Health, 11, 04045.
https://doi.org/10.7189/jogh.11.04045
Ingstad, K., Moe, A., Brataas, H. V. (2021). Patient Involvement During a Pathway of Home-Based Reablement for Older Persons : A Longitudinal Single-Case Study. Journal of Multidisciplinary Healthcare, 14, 1911
‑1921.https://doi.org/10.2147/JMDH.S321760
Jensen, A. M., Jensen, E. A., Duca, E., Roche, J. (2021). Investigating diversity in European audiences for public engagement with research : Who attends European Researchers’ Night in Ireland, the UK and Malta? PloS One, 16(7),e0252854.https://doi.org/10.1371/journal.pone.0252854
Jones, J., Cowe, M., Marks, S., McAllister, T., Mendoza, A., Ponniah, C., Wythe, H., Mathie, E. (2021). Reporting on patient and public involvement (PPI) in research publications : Using the GRIPP2 checklists with lay co-researchers. Research Involvement and Engagement, 7(1),52. https://doi.org/10.1186/s40900-021-00295-w
Kakuhikire, B., Satinsky, E. N., Baguma, C., Rasmussen, J. D., Perkins, J. M., Gumisiriza, P., Juliet, M., Ayebare, P., Mushavi, R. C., Burns, B. F. O., Evans, C. Q., Siedner, M. J., Bangsberg, D. R., Tsai, A. C. (2021). Correlates of attendance at community engagement meetings held in advance of bio-behavioral research studies : A longitudinal, sociocentric social network study in rural Uganda. PLoS Medicine, 18 (7), e1003705. https://doi.org/10.1371/journal.pmed.1003705
Khazanchi, R., Keeler, H., Strong, S., Lyden, E. R., Davis, P., Grant, B. K., Marcelin, J. R. (2021). Building structural competency through community engagement. The Clinical Teacher. https://doi.org/10.1111/tct.13399
Kortteisto, T., Laitila, M., & Pitkänen, A. (2021). Professionals’ views on patient involvement in acute psychiatric wards : A qualitative study. Perspectives in Psychiatric Care, 57(3), 1489‑1496. https://doi.org/10.1111/ppc.12716
Kroese, K., Ofori, B. A., Abdulai, D. R., Monahan, M., Prah, A., & Tabiri, S. (2021). Community engagement and involvement in Ghana : Conversations with community stakeholders to inform surgical research. Research Involvement and Engagement, 7(1), 50. https://doi.org/10.1186/s40900-021-00270-5
Lorgelly, P. K. (2021). Patient and Public Involvement in Health Economics and Outcomes Research. The Patient, 14(4), 379‑380. https://doi.org/10.1007/s40271-021-00505-3
Marrast, L., Conigliaro, J., Chan, C., Kim, E. J., Duer-Hefele, J., Diefenbach, M. A., Davidson, K. W. (2021). Racial and ethnic minority patient participation in N-of-1 trials : Perspectives of healthcare providers and patients. Personalized Medicine, 18(4), 347‑359. https://doi.org/10.2217/pme-2020-0166
McCausland, D., Murphy, E., McCarron, M., McCallion, P. (2021). The potential for person-centred planning to support the community participation of adults with an intellectual disability. Journal of Intellectual Disabilities : JOID, 17446295211022124.
https://doi.org/10.1177/17446295211022125
Merker, V. L., Lessing, A. J., Moss, I., Hussey, M., Oberlander, B., Rose, T., Thalheimer, R., Wirtanen, T., Wolters, P. L., Gross, A. M., Plotkin, S. R. (2021). Enhancing Neurofibromatosis Clinical Trial Outcome Measures Through Patient Engagement : Lessons From REiNS. Neurology. https://doi.org/10.1212/WNL.0000000000012430
Michaels, D. L., Peña, Y., Kunz, B. L., Getz, K. A. (2021). Evaluating the Feasibility and Validity of a New Tool to Assess Organizational Preparedness and Capabilities to Support Patient Engagement in Drug Development. Therapeutic Innovation & Regulatory Science. https://doi.org/10.1007/s43441-021-00289-6
Mitchell, S., Bragg, A., Gardiner, P., De La Cruz, B., Laird, L. (2021). Patient engagement and presence in a virtual world diabetes self-management education intervention for minority women. Patient Education and Counseling. https://doi.org/10.1016/j.pec.2021.06.033
Munoz, S.-A., Bradley, S. (2021). We’ve got what the NHS ultimately intended for us : Experiences of community engagement in rural primary care services change. Social Science & Medicine (1982), 280, 114033. https://doi.org/10.1016/j.socscimed.2021.114033
Nuuyoma, V., Makhene, A. (2021). The use of clinical practice to facilitate community engagement in the Faculty of Health Science. Nurse Education in Practice, 54, 103102. https://doi.org/10.1016/j.nepr.2021.103102
Osborne, J., Paget, J., Giles-Vernick, T., Kutalek, R., Napier, D., Baliatsas, C., Dückers, M. (2021). Community engagement and vulnerability in infectious diseases : A systematic review and qualitative analysis of the literature. Social Science & Medicine (1982), 284, 114246. https://doi.org/10.1016/j.socscimed.2021.114246
Owyang, D., Bakhsh, A., Brewer, D., Boughton, O. R., Cobb, J. P. (2021). Patient and Public Involvement Within Orthopaedic Research : A Systematic Review. The Journal of Bone and Joint Surgery. American Volume, 103(13), e51.https://doi.org/10.2106/JBJS.20.01573
Paukkonen, L., Oikarinen, A., Kähkönen, O., Kyngäs, H. (2021). Patient participation during primary health-care encounters among adult patients with multimorbidity : A cross-sectional study. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13306
Plaisier, H., Meagher, T. R., Barker, D. (2021). DNA sonification for public engagement in bioinformatics. BMC Research Notes, 14(1), 273. https://doi.org/10.1186/s13104-021-05685-7
Price, A., Clarke, M., Staniszewska, S., Chu, L., Tembo, D., Kirkpatrick, M., Nelken, Y. (2021). Patient and Public Involvement in research : A journey to co-production. Patient Education and Counseling.
https://doi.org/10.1016/j.pec.2021.07.021
Quigley, R., Russell, S. G., Sagigi, B. R., Miller, G., Strivens, E. (2021). Community involvement to maximise research success in Torres Strait Islander populations : More than just ticking the boxes. Rural and Remote Health, 21(3), 5957. https://doi.org/10.22605/RRH5957
Raval, P., Moreno, F., Needleman, I. (2021). Patient involvement to explore research prioritisation and self-care management in people with periodontitis and diabetes. British Dental Journal.
https://doi.org/10.1038/s41415-021-3175-9
Raynault, A., Lebel, P., Brault, I., Vanier, M.-C., & Flora, L. (2021). How interprofessional teams of students mobilized collaborative practice competencies and the patient partnership approach in a hybrid IPE course. Journal of Interprofessional Care, 35(4), 574‑585. https://doi.org/10.1080/13561820.2020.1783217
Reynolds, J., Ogden, M., & Beresford, R. (2021). Conceptualising and constructing « diversity » through experiences of public and patient involvement in health research. Research Involvement and Engagement, 7(1), 53. https://doi.org/10.1186/s40900-021-00296-9
Rieger, K. L., Bennett, M., Martin, D., Hack, T. F., Cook, L., Hornan, B. (2021). Digital Storytelling as a Patient Engagement and Research Approach With First Nations Women : How the Medicine Wheel Guided Our Debwewin Journey. Qualitative Health Research, 10497323211027528. https://doi.org/10.1177/10497323211027529
Riggs, E., Yelland, J., Mensah, F. K., Gold, L., Szwarc, J., Kaplan, I., Small, R., Middleton, P., Krastev, A., McDonald, E., East, C., Homer, C., Nesvadba, N., Biggs, L., Braithwaite, J., Brown, S. J. (2021). Group Pregnancy Care for refugee background women : A codesigned, multimethod evaluation protocol applying a community engagement framework and an interrupted time series design. BMJ Open, 11(7), e048271. https://doi.org/10.1136/bmjopen-2020-048271
Shields, G. E., Brown, L., Wells, A., Capobianco, L., Vass, C. (2021). Utilising Patient and Public Involvement in Stated Preference Research in Health : Learning from the Existing Literature and a Case Study. The Patient, 14(4), 399‑412. https://doi.org/10.1007/s40271-020-00439-2
Spears, P. A. (2021). Patient engagement in cancer research from the patient’s perspective. Future Oncology (London, England).
https://doi.org/10.2217/fon-2020-1198
Staniszewska, S., Hill, E. M., Grant, R., Grove, P., Porter, J., Shiri, T., Tulip, S., Whitehurst, J., Wright, C., Datta, S., Petrou, S., Keeling, M. (2021a). Developing a Framework for Public Involvement in Mathematical and Economic Modelling : Bringing New Dynamism to Vaccination Policy Recommendations. The Patient, 14(4), 435‑445.
https://doi.org/10.1007/s40271-020-00476-x
Staniszewska, S., Hill, E. M., Grant, R., Grove, P., Porter, J., Shiri, T., Tulip, S., Whitehurst, J., Wright, C., Datta, S., Petrou, S., Keeling, M. (2021b). Correction to : Developing a Framework for Public Involvement in Mathematical and Economic Modelling : Bringing New Dynamism to Vaccination Policy Recommendations. The Patient, 14(4), 447.
https://doi.org/10.1007/s40271-021-00497-0
Street, M., Dempster, J., Berry, D., Gray, E., Mapes, J., Liskaser, R., Papageorgiou, S., Considine, J. (2021). Enhancing active patient participation in nursing handover : A mixed methods study. Journal of Clinical Nursing. https://doi.org/10.1111/jocn.15961
Tivey, A., Huddar, P., Shotton, R., Cheese, I., Daniels, S., Lorigan, P., J Lee, R. (2021). Patient engagement in melanoma research : From bench to bedside. Future Oncology (London, England). https://doi.org/10.2217/fon-2020-1165
Van Hemelrijck, M., Peters, V., Loong, J. F., Russell, B., Fox, L., Wylie, H., Santaolalla, A., Beyer, K., Rammant, E., Lin, E., Haire, A., Moss, C., Green, S. (2021). The importance of patient and public involvement in cancer research : Time to create a new job profile. Future Oncology (London, England). https://doi.org/10.2217/fon-2021-0489
Venkatraman, K., Manoharan, A. (2021). Public Engagement as the Fifth Dimension of Outbreak Communication : Public’s Perceptions of Public Health Communication during COVID-19 in India. Health
Communication, 1‑13. https://doi.org/10.1080/10410236.2021.1950294
Weingart, P., Joubert, M., Connoway, K. (2021). Public engagement with science-Origins, motives and impact in academic literature and science policy. PloS One, 16(7), e0254201. https://doi.org/10.1371/journal.pone.0254201
Willis, M. A., Hein, L. B., Hu, Z., Saran, R., Argentina, M., Bragg-Gresham, J., Krein, S. L., Gillespie, B., Zheng, K., Veinot, T. C. (2021). Feeling better on hemodialysis : User-centered design requirements for promoting patient involvement in the prevention of treatment complications. Journal of the American Medical Informatics Association : JAMIA, 28(8), 1612‑1631.
https://doi.org/10.1093/jamia/ocab033
Witton R., Paisi M. (2021). The benefits of an innovative community engagement model in dental undergraduate education. Education for Primary Care : An Official Publication of the Association of Course Organisers, National Association of GP Tutors, World Organisation of Family Doctors, 1‑5. https://doi.org/10.1080/14739879.2021.1947160
Boardman S. (2021). Creating wellness apps with high patient engagement to close the intention-action gap. International Psychogeriatrics, 33(6), 551‑552. https://doi.org/10.1017/S1041610220003385
Boutrouille L., Régis C., Pomey M.-P. (2021). Enjeux juridiques propres au modèle émergent des patients accompagnateurs dans les milieux de soins au Québec. Revue juridique Thémis de l’Université de Montréal, 55(47), 47‑101.
Campbell, B., Sedrakyan, A. (2021). Patient involvement in regulation : An unvalued imperative. Lancet (London, England), 397(10290), 2147‑2148. https://doi.org/10.1016/S0140-6736(21)00977-6
Cantarero-Arévalo, L., Werremeyer, A. (2021). Community involvement and awareness raising for better development, access and use of medicines : The transformative potential of photovoice. Research in Social & Administrative Pharmacy : RSAP.
https://doi.org/10.1016/j.sapharm.2021.05.017
Carvalho, P. R., Ferraz, E. S. D., Teixeira, C. C., Machado, V. B., Bezerra, A. L. Q., Paranaguá, T. T. de B. (2021). Patient participation in care safety : Primary Health Care professionals’ perception. Revista brasileira de enfermagem, 74(2), e20200773. https://doi.org/10.1590/0034-7167-2020-0773
Chia, Y. Y. P., Ekladious, A. (2021). Australian public hospital inpatient satisfaction related to early patient involvement and shared decision-making in discharge planning. Internal Medicine Journal, 51(6), 891‑895. https://doi.org/10.1111/imj.14872
De Boer, M. L. (2021). Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process. Sociology of Health & Illness. https://doi.org/10.1111/1467-9566.13301
Diaz, A., Gove, D., Nelson, M., Smith, M., Tochel, C., Bintener, C., Ly, A., Bexelius, C., Gustavsson, A., Georges, J., Gallacher, J., Sudlow, C. (2021). Conducting public involvement in dementia research : The contribution of the European Working Group of People with Dementia to the ROADMAP project. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 24(3), 757‑765. https://doi.org/10.1111/hex.13246
Ekezue, B. F., Bushelle-Edghill, J., Dong, S., Taylor, Y. J. (2021). The effect of broadband access on electronic patient engagement activities : Assessment of urban-rural differences. The Journal of Rural Health : Official Journal of the American Rural Health Association and the National Rural Health Care Association. https://doi.org/10.1111/jrh.12598
Ellis, U., Kitchin, V., Vis-Dunbar, M. (2021). Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses : Rapid Review. Journal of Participatory Medicine, 13(2), e27141. https://doi.org/10.2196/27141
Erickson, N., Schinkoethe, T., Eckhardt, C., Storck, L., Joos, A., Liu, L., Ballmer, P. E., Mumm, F., Fey, T., Heinemann, V. (2021). Patient-reported outcome measures obtained via E-Health tools ease the assessment burden and encourage patient participation in cancer care (PaCC Study). Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer. https://doi.org/10.1007/s00520-021-06351-1
Faulkner, S. D., Pittens, C. A. C. M., Goedhart, N. S., Davies, E. H., Manning, E., Diaz-Ponce, A., Jose Vicente Edo, M., Prieto-Remón, L., Husain, L., Huberman, K., Boudes, M., Subramaniam, M. (2021). Optimising Multi-stakeholder Practices in Patient Engagement : A Gap Analysis to Enable Focused Evolution of Patient Engagement in the Development and Lifecycle Management of Medicines. Therapeutic Innovation & Regulatory Science. https://doi.org/10.1007/s43441-021-00313-9
Feig, S. A. (2021). Influence of Patient Participation on Decreased Mortality from Screening Mammography. Radiology, 299(3), 548‑549. https://doi.org/10.1148/radiol.2021210226
Gemmeke, M., Koster, E. S., Janatgol, O., Taxis, K., Bouvy, M. L. (2021). Pharmacy fall prevention services for the community-dwelling elderly : Patient engagement and expectations. Health & Social Care in the Community. https://doi.org/10.1111/hsc.13475
Gentile, S., Tardieu, S., Poncet, V., Pomey, M.-P., Jarno, P., & Berkesse, A. (2021). Expérience patients et professionnels de santé face à l’émergence de l’épidémie COVID-19 : Approche qualitative exploratoire au cours du premier confinement.
Goessl, C. L., VanWormer, J. J., Pathak, R. D., Ellerbeck, E. F., Befort, C. A. (2021). Mental health, weight change, and patient engagement in a rural behavioral weight loss trial. Preventive Medicine, 106698.
https://doi.org/10.1016/j.ypmed.2021.106698
Grant, S., Armstrong, C., Khodyakov, D. (2021). Online Modified-Delphi : A Potential Method for Continuous Patient Engagement Across Stages of Clinical Practice Guideline Development. Journal of General Internal Medicine, 36(6), 1746‑1750. https://doi.org/10.1007/s11606-020-06514-6
Hamilton, C. B., Hoens, A. M., McKinnon, A. M., McQuitty, S., English, K., Hawke, L. D., Li, L. C. (2021). Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 24(3), 863‑879. https://doi.org/10.1111/hex.13227
Haricharan, H. J., Stuttaford, M., London, L. (2021). The role of community participation in primary health care : Practices of South African health committees. Primary Health Care Research & Development, 22, e31. https://doi.org/10.1017/S146342362100027X
Hou, Z., Tong, Y., Du, F., Lu, L., Zhao, S., Yu, K., Piatek, S. J., Larson, H. J., Lin, L. (2021). Assessing COVID-19 Vaccine Hesitancy, Confidence, and Public Engagement : A Global Social Listening Study. Journal of Medical Internet Research, 23(6), e27632.
https://doi.org/10.2196/27632
Jayes, M., Moulam, L., Meredith, S., Whittle, H., Lynch, Y., Goldbart, J., Judge, S., Webb, E., Meads, D., Hemsley, B., Murray, J. (2021). Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders : The I-ASC Project. Qualitative Health Research, 31(7), 1260‑1274. https://doi.org/10.1177/1049732321994791
Kavolus, J. J., Moverman, M. A., Karas, V., Iorio, R. (2021). Patient Engagement Technologies in Orthopaedics : What They Are, What They Offer, and Impact. The Journal of the American Academy of Orthopaedic Surgeons, 29(12), e584‑e592.
https://doi.org/10.5435/JAAOS-D-20-00585
Kirkland, E., Schumann, S. O., Schreiner, A., Heincelman, M., Zhang, J., Marsden, J., Mauldin, P., Moran, W. P. (2021). Patient Demographics and Clinic Type Are Associated With Patient Engagement Within a Remote Monitoring Program. Telemedicine Journal and E-Health : The Official Journal of the American Telemedicine Association.
https://doi.org/10.1089/tmj.2020.0535
Kirsch, V., Matthes, J. (2021). Aspects of Medication and Patient participation-an Easy guideLine (AMPEL). A conversation guide increases patients’ and physicians’ satisfaction with prescription talks. Naunyn-Schmiedeberg’s Archives of Pharmacology.
https://doi.org/10.1007/s00210-021-02107-0
Ogourtsova, T., O’Donnell, M. E., Filliter, J. H., Wittmeier, K., Majnemer, A. (2021). Patient engagement in an online coaching intervention for parents of children with suspected developmental delays. Developmental Medicine and Child Neurology, 63(6), 668‑674. https://doi.org/10.1111/dmcn.14810
Papoulias, S. C., Callard, F. (2021). ’A limpet on a ship’ : Spatio-temporal dynamics of patient and public involvement in research. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 24(3), 810‑818.
https://doi.org/10.1111/hex.13215
Pickering, E. C., Hanley, B., Bell, P., Gath, J., Hanlon, P., Oldroyd, R., Stephens, R., Tweed, C. D. (2021). Formalising the induction of patient and public involvement contributors on trial oversight committees. Research Involvement and Engagement, 7(1), 42.
https://doi.org/10.1186/s40900-021-00269-y
Rawl S. M., Newhouse R. P. (2021). Advancing Methods for Patient and Community Engagement. Western Journal of Nursing Research, 1939459211027656. https://doi.org/10.1177/01939459211027656
Rouncefield-Swales, A., Harris, J., Carter, B., Bray, L., Bewley, T., Martin, R. (2021). Children and young people’s contributions to public involvement and engagement activities in health-related research : A scoping review. PloS One, 16(6), e0252774.
https://doi.org/10.1371/journal.pone.0252774
Scheufele, D. A., Krause, N. M., Freiling, I., Brossard, D. (2021). What we know about effective public engagement on CRISPR and beyond. Proceedings of the National Academy of Sciences of the United States of America, 118(22). https://doi.org/10.1073/pnas.2004835117
Schilling, I., Bleidorn, J., Ehrmann, U., Müller-Fries, E., Rathjen, K. I., Saedler, K. (2021). Opportunities and challenges of active patient involvement in clinical research in Germany—From the perspectives of a patient representative, a clinical researcher and two staff members of research funding management. Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen, 163, 66‑75. https://doi.org/10.1016/j.zefq.2021.03.003
Shields, M. C., Singer, J., Rosenthal, M., Sato, L., Keohane, C., Janes, M., Boulanger, J., Martins, N., Rabson, B. (2021). Patient Engagement Activities and Patient Experience : Are Patients With a History of Depression the Canary in the Coal Mine? Medical Care Research and Review : MCRR, 78(3), 251‑259.
https://doi.org/10.1177/1077558719850705
Sine, S., de Bruin, A., Getz, K. (2021). Patient Engagement Initiatives in Clinical Trials : Recent Trends and Implications. Therapeutic Innovation & Regulatory Science, 1‑7. https://doi.org/10.1007/s43441-021-00306-8
Spencer, J., Gilmore, B., Lodenstein, E., Portela, A. (2021). A mapping and synthesis of tools for stakeholder and community engagement in quality improvement initiatives for reproductive, maternal, newborn, child and adolescent health. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 24(3), 744‑756. https://doi.org/10.1111/hex.13237
Van Deen, W. K., Khalil, C., Dupuy, T. P., Bonthala, N. N., Spiegel, B. M. R., Almario, C. V. (2021). Assessment of inflammatory bowel disease educational videos for increasing patient engagement and family and friends’ levels of understanding. Patient Education and Counseling.
https://doi.org/10.1016/j.pec.2021.06.006
Van Veenendaal, N. R., Auxier, J. N., van der Schoor, S. R. D., Franck, L. S., Stelwagen, M. A., de Groof, F., van Goudoever, J. B., Eekhout, I. E., de Vet, H. C. W., Axelin, A., van Kempen, A. A. M. W. (2021). Development and psychometric evaluation of the CO-PARTNER tool for collaboration and parent participation in neonatal care. PloS One, 16(6), e0252074. https://doi.org/10.1371/journal.pone.0252074
Wärdig, R., Olofsson, F., Eldh, A. C. (2021). Conceptualizing patient participation in psychiatry : A survey describing the voice of patients in outpatient care. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13285
Willis, M. A., Hu, Z., Saran, R., Argentina, M., Bragg-Gresham, J., Krein, S. L., Gillespie, B., Zheng, K., Veinot, T. C. (2021). Feeling better on hemodialysis : User-centered design requirements for promoting patient involvement in the prevention of treatment complications. Journal of the American Medical Informatics Association : JAMIA.
https://doi.org/10.1093/jamia/ocab033
Yu, Q. J., Pun, J. (2021). Promoting Patient Engagement in Medical Informed Consent—A Qualitative Study of Chinese Doctors’ Communication Strategies. Health Communication, 1‑9.
https://doi.org/10.1080/10410236.2021.1932287
Zidaru, T., Morrow, E. M., & Stockley, R. (2021). Ensuring patient and public involvement in the transition to AI-assisted mental health care : A systematic scoping review and agenda for design justice. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13299
Tremblay, D., Touati, N., Usher, S., Bilodeau, K., Pomey, M.-P., & Lévesque, L. (2021). Patient participation in cancer network governance : A six-year case study. BMC Health Services Research, 21(1), 929.
https://doi.org/10.1186/s12913-021-06834-1
Gross o., Gagnayre R. (2021). » Diminuer les injustices épistémiques au moyen d’enseignement par et avec les patients : l’expérience pragmatiste de la faculté de médecine de Bobigny« . Revue Canadienne de bioéthique/Canadian Journal of Bioethics. Vol. 4, N°1, pp. 70-78.
Merle R., Casagrande A., Pariset A., Pépin J.-L., Palombi O., Debru R., Borel J.-C., Pison C. (2021), « Rôles des patients dans le système de santé, la formation et la recherche en santé : une perspective française ». Revue d’Épidémiologie et de Santé Publique, 19 May 2021 online : https://doi.org/10.1016/j.respe.2021.04.136
Raimondi M. J. (2021) « Dialectique temporelle dans le récit de soi vivant avec une maladie rare », Educar em Revista, vol.37 Curitiba 2021 Epub Apr 28, 2021
Kennedy E.D., McKenzie M., Schmocker S., Jeffs L., Cusimano M.D., Pooni A., Nenshi R., Scheer A.S., Forbes T. L., McLeod R.S., « Patient engagement study to identify and improve surgical experience », British Journal of Surgery , Volume 108, Numéro 4 , Avril 2021, pages 435-440
Lunel A. (2021). » Du patient formateur au médiateur de santé pair, histoire de formations ancrées dans la cité ». Le partenariat de soin avec le patient : analyses, N°2 : Université Côte d’azur, pp. 8-23.
Saoût C. (2021); » Historique, état des lieux et perspectives de la démocratie sanitaire : le point de vue de ses acteurs « . Le partenariat de soin avec le patient : analyses, N°2 : Université Côte d’azur, pp. 23-38
Dupuis M., Castillo M.-C (2021) « La coconstruction entre usagers et professionnels dans la recherche et le soin « . Le partenariat de soin avec le patient : analyses, N°2 : Université Côte d’azur, pp. 65-79.
Rubinstein S. (2021). » Être médiateur de santé pair, pair aidant en France, les paradoxes de la professionnalisation des patients « . Le partenariat de soin avec le patient : analyses, N°2 : Université Côte d’azur, pp. 80-92.
Aho-Glele U., Pomey M.-P., Gomes de Sousa M. R., Bouabida K. (2021). «An evidence-based tool (PE for PS) for healthcare managers to assess patient engagement for patient safety in healthcare organizations » Patient Experience Journal : Vol. 8: Iss. 1, article 7. DOI: 10.35680 / 2372-0247.1454
Pommery-De Villeneuve A., Claudon M., Besse M. (2021).« Quelle place aujourd’hui pour le patient expert dans le parcours de soins ? Premiers repères pour commencer à y voir clair…».Psychotropes 2021/1-2 (Vol. 27), pp. 37-40.
Liégeois S., Didier B. (2021). « La pair-aidance ? Opportunisme ou conversion sincère ? ». Psychotropes 2021/1-2 (Vol. 27), pp. 45-52.
Dos Santos M., Magen C., Martelli P., Ferrero M., Tameur S., Guttowski M., Roux P. (2021). « C-Nous : des usagers de drogues accompagnent leurs pairs vers le dépistage et la prise en charge du VHC : le projet parrainage ». Psychotropes 2021/1-2 (Vol. 27), pp. 53-63.
Dejour A. (2021). « Une certification Patient-Expert Addictions au carrefour du savoir expérientiel du patient rétabli de ses conduites addictives et des activités des acteurs des soins ». Psychotropes 2021/1-2 (Vol. 27), pp. 77-94.
Brun P. (2021). La pair-aidance, posture critique. Psychotropes 2021/1-2 (Vol. 27), pp. 97-100.
Delaquaize H. (2021) « Un médiateur en santé publique a-t-il une place dans une institution ? Une expérience innovante » Psychotropes 2021/1-2 (Vol. 27), pp. 101-106
Pommery-De Villeneuve A., « Une expérience de Patient expert en addictologie ». Psychotropes 2021/1-2 (Vol. 27), pp. 117-125
Delaquaize H., Brun P., Caporossi A., Granier J.-M. (2021). « Médiateur santé publique, médiateur santé pair, pair aidant, patient expert ? Synthèse & conclusion ». Psychotropes 2021/1-2 (Vol. 27), pp. 127-130.
Gardien E. (2021). » Les professionnels du soin et les savoirs issus de l’expérience des patients » . Soins cadres. No 125 – février 2021, pp. 35-38
L’Espérance, A. O’Brien, N., Grégoire, A. et al. (2021). Developing a Canadian evaluation framework for patient and public engagement in research : Study protocol. Research Involvement and Engagement, 7(1), 10. https://doi.org/10.1186/s40900-021-00255-4
Green, S., Tuck, S., Long, J., Green, T., Green, A., Ellis, P., Haire, A., Moss, C., Cahill, F., McCartan, N., Brown, L., Santaolalla, A., Marsden, T., Justo, M. R., Hadley, J., Punwani, S., Attard, G., Ahmed, H., Moore, C. M., Van Hemelrijck, M. (2021). ReIMAGINE: a prostate cancer research consortium with added value through its patient and public involvement and engagement. Research Involvement and Engagement, 7(1), 81. https://doi.org/10.1186/s40900-021-00322-w
Leese, J., Garraway, L., Li, L., Oelke, N., MacLeod, M. (2021). Adapting patient and public involvement in patient-oriented methods research : Reflections in a Canadian setting during COVID-19. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13387
Michaels, D. L., Peña, Y., Kunz, B. L., Getz, K. A. (2021). Evaluating the Feasibility and Validity of a New Tool to Assess Organizational Preparedness and Capabilities to Support Patient Engagement in Drug Development. Therapeutic Innovation & Regulatory Science, 55(6), 1193‑1198. https://doi.org/10.1007/s43441-021-00289-6
Nichols, V., Pearce, G., Ellard, D. R., Evans, S., Haywood, K., Norman, C., Potter, R., Sandhu, H., Stewart, K., Underwood, M., Patel, S. (2021). Patient and public involvement in a UK National Institute for Health Research Programme Grant for Applied Research : Experiences from the Chronic Headache Education and Self-management Study (CHESS). Primary Health Care Research & Development, 22, e72. https://doi.org/10.1017/S1463423621000670
Rajamani, G., Rodriguez Espinosa, P., Rosas, L. G. (2021). Intersection of Health Informatics Tools and Community Engagement in Health-Related Research to Reduce Health Inequities : Scoping Review. Journal of Participatory Medicine, 13(3), e30062. https://doi.org/10.2196/30062
Rodriguez-Diaz, C. E., Davis, W., Ellis, M. V., Cameron, M. S., Donastorg, Y., Bowleg, L., Greenberg, A., Kerrigan, D. (2021). Disrupting the Systems : Opportunities to Enhance Methodological Approaches to Address Socio-Structural Determinants of HIV and End the Epidemic Through Effective Community Engagement. AIDS and Behavior, 25(Suppl 2), 225‑231.
https://doi.org/10.1007/s10461-021-03475-7
Sales, C. M. D., Martins, F., Alves, M. M., Carletto, S., Conejo-Cerón, S., da Silva, L. C., Čuš, A., Edridge, C., Ferreira, N., Hancheva, C., Lima, E. M. A., Liverpool, S., Midgley, N., Moltrecht, B., Moreno-Peral, P., Morgan, N., Mortimer, R., Mota, C. P., Pietrabissa, G., … Edbrooke-Childs, J. (2021). Patient and Public Involvement in Youth Mental Health Research : Protocol for a Systematic Review of Practices and Impact. Frontiers in Psychology, 12, 703624.
https://doi.org/10.3389/fpsyg.2021.703624
Hamilton, C. B., Hoens, A. M., McKinnon, A. M., McQuitty, S., English, K., Hawke, L. D., Li, L. C. (2021). Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13227
Aho-Glele U., Bouabida K., Kooijman A., Popescu I.-C., Pomey M.-P., Hawthornthwaite L., Ploquin J., Dunn S., Trbovich P., Tétrault B., Regina Gomes de Sousa M., Clément L., Lungu N. (2021) Developing The First Pan-Canadian Survey on Patient Engagement in Patient Safety. Research Square : Canada
Chegini Z., Shariful Islam S.-M. (2021). « Expert perspectives on the active role of patients in their safety: Toward a framework using Delphi methodology». Nursing forum, march 4, https://doi.org/10.1111/nuf.12567
Bilodeau K., Lee V., Pepin J., Pomey M.-P., Sultan S., Folch N., Charpentier D., Vachon M.-F., Dumont-Lagacé E., Piché L. (2021) « Apprendre par l’expérience de la survie au cancer: différences entre les groupes d’âge » , Journal of Psychosocial Oncology, DOI: 10.1080 / 07347332.2021.1878316
Pommery – de Villeneuve, A., Claudon, M. & Besse, M. (2021). Quelle place aujourd’hui pour le patient expert dans le parcours de soins ? Premiers repères pour commencer à y voir clair…. Psychotropes, 27, pp. 37-40. https://doi.org/10.3917/psyt.271.0037
Pommery – de Villeneuve, A. (2021). Une expérience de Patient expert en addictologie. Psychotropes, 27, pp. 117-125.
https://doi.org/10.3917/psyt.271.0117
Raymond, G. (2021). La démocratie en santé : origines, bilan et perspectives. Les Tribunes de la santé, 70, pp. 45-56.
https://doi.org/10.3917/seve1.070.0045
Pierru, F. (2021). La résistible affirmation des « malades-usagers » dans la gouvernance du système de santé. Les Tribunes de la santé, 70, pp.57-72.https://doi.org/10.3917/seve1.070.0057
Robert C., Imbert J. , Lajnef M., Noûs C., Cabiran G., Robert S., Cabiran F., Mathieu F. (2021). « Production de savoirs à partir de données collectées par les associations de malades : L’exemple de la fibromyalgie ». M/S Médecine/Sciences, Vol. 37 ; N°1, janvier, pp. 81-88
Brun, P. (2021). La pair-aidance, posture critique. Psychotropes, 27, 97-100. https://doi.org/10.3917/psyt.271.0097
Chambon, Nicolas, Véronique Traverso, et Halima Zeroug-Vial.« Médiateurs, pairs, interprètes… au secours du soin », Rhizome, vol. 75-76, no. 1-2, 2020, pp. 7-16.
Charlier, É. (2020). Modalités de médiation dans des groupes d’entraide pour personnes vivant avec le trouble bipolaire en Belgique francophone. Rhizome, 75-76, pp. 47-55. https://doi.org/10.3917/rhiz.075.0047
Delaquaize, H. (2021). Un médiateur en santé publique a-t-il une place dans une institution ? Une expérience innovante. Psychotropes, 27, pp. 101-106. https://doi.org/10.3917/psyt.271.0101
Delaquaize, H., Brun, P., Caporossi, A. Granier, J. (2021). Médiateur santé publique, médiateur santé pair, pair aidant, patient expert ? Synthèse & conclusion. Psychotropes, 27, pp. 127-130. https://doi.org/10.3917/psyt.271.0127
Liégeois, S., Didier, B. (2021). La pair-aidance ? Opportunisme ou conversion sincère ? Psychotropes, 27, pp. 45-52.
https://doi.org/10.3917/psyt.271.0045
Delaquaize, H. (2021). Un médiateur en santé publique a-t-il une place dans une institution ? Une expérience innovante. Psychotropes, 27, pp. 101-106.https://doi.org/10.3917/psyt.271.0101
Delaquaize, H., Brun, P., Caporossi, A., Granier, J. (2021). Médiateur santé publique, médiateur santé pair, pair aidant, patient expert ? Synthèse & conclusion. Psychotropes, 27, pp. 127-130. https://doi.org/10.3917/psyt.271.0127
Demailly, L. (2020). Les pratiques des médiateurs de santé-pairs en santé mentale. Rhizome, 75-76, pp. 37-46.
https://doi.org/10.3917/rhiz.075.0037
Gross, O. (2020). Les défis associés à la fonction de médiateur de santé pair : enjeux pour leur formation initiale et continue. Rhizome, 75-76, pp. 164-173. https://doi.org/10.3917/rhiz.075.0164
Laval, C. Gardien, È. (2020). Accompagner ses pairs n’est pas une activité de médiation, pourtant ils sont appelés « médiateurs de santé-pairs »…. Rhizome, 75-76, pp. 184-192. https://doi.org/10.3917/rhiz.075.0184
Niard, C., Maugiron, P. & Franck, N. (2020). Le pair-aidant professionnel : un nouvel acteur pour de nouvelles réponses. Rhizome, 75-76, pp. 17-26.https://doi.org/10.3917/rhiz.075.0017
Brun, P. (2021). La pair-aidance, posture critique. Psychotropes, 27, pp. 97-100. https://doi.org/10.3917/psyt.271.0097
Chambon, Nicolas, Véronique Traverso, et Halima Zeroug-Vial. «Médiateurs, pairs, interprètes… au secours du soin », Rhizome, vol. 75-76, no. 1-2, 2020, pp. 7-16.
Charlier, É. (2020). Modalités de médiation dans des groupes d’entraide pour personnes vivant avec le trouble bipolaire en Belgique francophone. Rhizome, 75-76, pp. 47-55. https://doi.org/10.3917/rhiz.075.0047
Banner D. J., Graham I. D., Bains M., Carroll S., Aaron S., Healey J., Stewart D., Tang A., Runte M., Mcgavin C., Kandola D. K. (2020). » Ready to go: Using an integrated knowledge translation approach to support the development of a funding application to explore patient engagement in Canadian circulatory and respiratory diseases research« . IKTRN casebook. Vol. 2, pp. 19-22.
Schraub S., Blaise P., Noel G., Casset A., Etienne-Selloum N., Da Silva F., Marchal P., Bergerot P. (2020). » Patients acteurs et formation en oncologie pour futurs médecins et pharmaciens« . Bulletin du cancer, 24 décembre 2020 online : https://doi.org/10.1016/j.bulcan.2020.10.023
Liu L.G., Ancker j.S.,Creber M.M.R. (2020). « Improving Patient Engagement Through Patient Decision Support« . American Journal of Preventive Medicine, 3 décembre 2020,
https://doi.org/10.1016/j.amepre.2020.08.010
Pomey, M., Bush, P., Demers-Payette, O., L’Espérance, A., Lochhead, L., Ganache, I., Roy, D. (2020). Developing recommendations for the diagnosis and treatment of Lyme disease: The role of the patient’s perspective in a controversial environment. International Journal of Technology Assessment in Health Care, 1-6. doi:10.1017/S0266462320002123
FORMINDEP (2020). Influences des firmes pharmaceutiques et associations de patients. Formindep, l’indépendance au service de la santé.
Roche P., Shimmin C., Hickes S., Khan M, Sherzoi O., Wicklund E., Lavoie J. G., Hardie S., Wittmeier K. D. M., Sibley K. M. (2020). »Valuing All Voices: refining a trauma-informed, intersectional and critical reflexive framework for patient engagement in health research using a qualitative descriptive approach« . Research Involvement and Engagement. 6:42
Healey, A., van Beinum, A., Hornby, L., Wilson L. C., Bédard S., Berrigan H., rodrrecht D., Gillrie C., Shing T., Tower J., Tilokee E., Shemie S. D. (2020). « Participation des patients à un forum de consensus canadien sur le don de cœur après la détermination circulatoire du décès« . Can J Anesth / J Can Anesth, n° 67, pp.1738-1748 https://doi.org/10.1007/s12630-020-01808-z
Moisan D., Obadia C., Arnaud F., Pommery A., Claudon M., Lejoyeux M. (2020). « Place du dispositif patients experts en addictologie lors de l’épidémie de COVID-19: le lien ville-hôpital. Place du dispositif «Expert Patients in Addictology» lors de l’épidémie COVID-19: Le lien ville-hôpital« . La presse médicale formation, Vol. 1, Issue 5, novembre 2020, pp. 451-456
Clavel N., Pomey M.-P. (2020). »Enhancing patient involvement in quality improvement: How complaint managers see their roles and limitations« . Patient Experience Journal: Vol. 7 : Iss. 3 , Article 14.
Clavel N., Pomey M.-P. (2020). « Clinical Governance to enhance user involvement in care : a canadian case study in mental health ». International Journal of Health policy and management.2020/11/07, pp.1-12.
Dumais-Levesque G., Pomey M.-P. (2020). « Exploring peer mentoring in pediatric transition: Perspectives of different stakeholders about accompanying patients in gastroenterology ».Patient Experience Journal. Vol. 7; 3, pp. 71-82
Simon E., Arborio S., Halloy A., Hejeoka F. (2020). Les savoirs expérientiels en santé fondements épistémologiques et enjeux identitaires, Charenton le pont: FMSH
Hejoaka F., Halloy A., simon E., Arborio S. (2020). La fabrique des savoirs expérientiels : généalogie de la notion, jalons définitionnels et desccription en situation. in Les savoirs expérientiels en santé fondements épistémologiques et enjeux identitaires, Charenton le pont: FMSH, pp. 11-48.
Heloaka F.Halloy A., Simon E. (2020). Définir les savoirs expérientiels en santé: une revue de littérature en sciences humaines et sociales. In Les savoirs expérientiels en santé fondements épistémologiques et enjeux identitaires, Charenton le pont: FMSH, pp. 49-74.
Musso S. (2020). Professionnaliser l’ »expertise profane »? Retour sur un programme expérimental de formation de « médiateur de santé » entre 1999 et 2005 en France. In Les savoirs expérientiels en santé fondements épistémologiques et enjeux identitaires, Charenton le pont: FMSH, pp. 75-96.
Besson A. (2020). Enjeux identitaires – Mise en récit, mise en savoir du corps du malade. In Les savoirs expérientiels en santé fondements épistémologiques et enjeux identitaires, Charenton le pont: FMSH, pp. 125-140.
Delavigne V. (2020). Une analyse socioterminologique de forums de patients atteints de cancer culture périmédicale et expertise. In Les savoirs expérientiels en santé fondements épistémologiques et enjeux identitaires, Charenton le pont: FMSH, pp. 159-178.
Kessler-Bithauer D. (2020). Des expériences vécues et des savoirs expérientiels partagés entre proches : une exploration du rôle des témoignages dans la construction des parcours de soins en Lorraine rurale. In Les savoirs expérientiels en santé fondements épistémologiques et enjeux identitaires, Charenton le pont: FMSH, pp. 179-196.
Guelle B. Guyet D. (2020). « Le patient « pair partenaire » : un facilitateur du gain d’empowerment des patients en pratique kinésithérapique libérale (2e partie) ». Kynésitherapie Scientifique, N°626, pp. 37-44
Guelle B. Guyet D. (2020). » Le patient « pair partenaire » : un facilitateur du gain d’empowerment des patients en pratique kinésithérapique libérale (1ère partie) ». Kynésitherapie Scientifique, N°625, pp. 35-48
Zøylner I.A., Kirkegaard P., Christiansen P. M., Lomborg K. (2020). » Patient involvement in the development of the Danish surgical breast cancer patient pathway–An action research project« . Action Research. 2020, October 13 online
Grimaldi A. (2020). « Patient expert ou patient ressource ? ». Médecine des Maladies Métaboliques, 14, pp.545 : hal-0349256
Gardien E. (2020). « Pairjectivité : des savoirs expérientiels ni objectifs, ni subjectifs« . Éducation et socialisation. Article en ligne.
Ludwig C., Graham I. D, Gifford W. Lavoie J., Stacey D. (2020). « Partnering with frail or seriously ill patients in research: a systematic review« . Research Involvement and Engagement, pp.6-52
https://doi.org/10.1186/s40900-020-00225-2
Sibeoni J., Verneuil L. Manolios E., Révah-Levy A. (2020). « A specific method for qualitative medical research: the IPSE (Inductive Process to analyze the Structure of lived Experience) approach« . BMC Medical Research Methodology, n° 20:216
Haaser T., Constantinidès Y., Dejean C., Escande A. ;, Le Tallec P., Lorchel F., Marty S., Tureaau S., Huguet F., Lagrange J.-L. (2020). « Démocratie sanitaire : le patient partenaire de sa prise en chargeHealth democracy: Patient partnership”. Cancer/Radiothérapie, pp. 736-743.
Durand . (2020). « Les origines de la pair aidance ». . Pratique en santé mentale, 2020/3, pp. 7-13
Flora L., Brun P. (2020). » Naissance de la pair-aidance en France : les médiateurs de santé pairs ». Pratique en santé mentale, 2020/3, pp. 14-19
Maugiron P. (2020). Les différentes modalités qui déterminent l’accompagnement par les pairs ». Pratique en santé mentale, 2020/3, pp. 20-25
Bonnet C. (2020). « Professionnalisation des pairs aidants, une impasse? . Pratique en santé mentale, 2020/3, pp. 26-39
Launat D. (2020). » De qui suis je le pair? ». Pratique en santé mentale, 2020/3, pp. 40-49.
Niard C. Franck N. (2020). » Apports de la pair-aidance aux dispositifs de santé mentale en France. Quelles formes de pair-aidance pour quels objectifs? Pratique en santé mentale, 2020/3, pp. 50-57.
Ferroud G. (2020). « Dispositif innovant et pair aidance ENTRELIEN, le maillon manquant…Pratique en santé mentale, 2020/3, pp. 58-63
Gross O. (2020). » Se former dans un « laboratoire social« , l’exemple de PEP 13 ». Maugiron P. (2020). Pratiques en santé mentale, 2020/3, pp. 64-70
Aloisio Alves C., Prot B., Pacquola M., Cavac C., Breton H., Fernandez N. (2020). « Mobiliser les savoirs expérientiels pour la recherche et la formation des professionnels de la santé : concepts et méthodologies« . Pédagogie médicale, N° 21, juillet, pp. 53-59
Batt S., Butler J., Shannon O., Fugh-Berman A. (2020). Pharmaceutical Ethics and Grassroots Activism in the United States: A Social History Perspective. J. Bioeth Inq, march; N°17, Vol. 1, pp. 49-60
Happell B., Gordon S., Roper C., Scholz B., Hellis P., Waks S., Warner T.(2020). »It is always worth the extra effort’: Organizational structures and barriers to collaboration with consumers in mental health research: Perspectives of non‐consumer researchers allies ». International Journal of mental health nurses. 28 june 2020 https://doi.org/10.1111/inm.12757
Chevallier F., Duhot D., Mercier A. Lombrail P., Saynac Y. (2020). [Point de vue] Plaidoyer pour l’intégration des patients formateurs dans l’enseignement des futurs médecins généralistes à partir de l’expérience de l’université Sorbonne Paris Nord et de la littérature internationale. Revue française des affaires sociales 2020/1, pp. 281-293
Malloggi, L., Leclère, B., Le Glatin, C. et al. (2020).Patient involvement in healthcare workers’ practices: how does it operate? A mixed-methods study in a French university hospital. BMC Health Serv Res 20, 391 (2020). https://doi.org/10.1186/s12913-020-05271-w
Voyen M., Nguyen-Thi P.-L, Germain L., Pétré B., Younsi M., Mathieu J., Ziegler O., Böhme P. (2020). « Connaissance, perception et définition du concept « Patient Partenaire de Soins » : Qu’en pensent les professionnels de santé impliqués en éducation thérapeutique ? Résultats d’une enquête nationale. ». in La revue sur le partenariat de soin avec le patient : Analyses, N°1, le centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université Côte d’Azur, pp. 73- 85.
Nguyen-Thi P.-L, Voyen M., Böhme P., Germain L., Pétré B., Breinbauer M., Scholtes B., Moukah D., Younsi M., Mathieu J., Ziegler O., (2020) « Pratiques institutionnelles concernant l’Approche Patient Partenaire (APPS) en Lorraine. » in La revue sur le partenariat de soin avec le patient : Analyses, N°1, le centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université Côte d’Azur, pp. 86-110.
Lartiguet P., Broussal D, Saint-Jean M., Szapiro N . (2020). « Opération-nalisation du partenariat de soin avec les patients : mise en œuvre d’une recherche-intervention en Occitanie ». in La revue sur le partenariat de soin avec le patient : Analyses, N°1, le centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université Côte d’Azur, pp. 111-137.
Hovey R. B., Pavate V., Vigouroux M., Amja K., (2020). A reconceptualization of the negative self-stereotyping of the patient-partner to the introduction of the patient perspective consultant » The Permanente journal. 12/02/2020. https://doi.org/10.7812/TPP/20.006
Trois œufs A. (2020). « Patients intervenants, médiateurs de santé-pairs : quelles figures de la pair-aidance en santé ? ». Rhizome 2020/1-2, N° 75-76, pp. 27-36
Niard C., Maugiron P., Franck N. (2020). « Le pair-aidant professionnel : un nouvel acteur pour de nouvelles réponses », Rhizome 2020/1-2, N° 75-76, pp. 26-36
Rhizome (2020). Pair-aidance, interprétariat et médiations, mars 2020, N° 75-76, pp. 27-36.
Michel P., Brudon A., Pom-y M.-P., Durieu I., Bailleu N., Baille A. Schott M., Dadon I., Saout C., Kouevi A,, Blanchardon F., Volta-Paulet B., Reuyaud Q., HHaesebaert J. (2020). « Approche terminologique de l’engagement des patients : point de vue d’un établissement de santé français ». Revue d’Épidémiologie et de Santé Publique, Vol. 68, Issue 1, February 2020,
pp. 51-56
Elwyn G., Price A. (2020). Engaging Patients in Healthcare Improvement and Innovation. Toronto, Canada : John Wiley & Sons Ltd.
Lechopier N., Granier B. (2020). » Patient expérience. Savoirs expérientiels et épistémologie de la formation médicale ». In, Éducation à la santé. Entre Savoir et Pouvoir, Paris : L’Harmattan.
Tourette-Turgis C, Pereira Paulo L. (2020). »L’Université des patients-Sorbonne : contexte de la création de cursus diplômants à destination des patients en France ». Risques & Qualité, (17)1, 28-31.
Schweitzer, L. (2020). « On est des (ex-) quelque chose »… De la mobilisation des savoirs expérientiels dans le travail pair. Rhizome, 75-76, pp. 56-66.
https://doi.org/10.3917/rhiz.075.0056
Halabi I, Scholtes B, Voz B., Gillain N, Durieux N., Odero A., Baumann M., Ziegler O., Gagnayre R., Guillaume M., Bragard I., Pétré B. (2020). « « Patient participation” and related concepts: A scoping review on their dimensional composition ». Patient Education and Counseling. Vol. 103, Issue 1, , January 2020, pp. 5-14
Claudon M., Pommery-de Villeneuve A. (2019). « Formation des étudiants en médecine par des patients experts en addictologie : une initiative récompensée par une Société Savante. » in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 33-47.
Hache C, Hache G. (2019).« L’efficacité d’un dispositif pédagogique universitaire intégrant des patients partenaires : le cas des internes en Pharmacie Hospitalière. » in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 48-62.
Eildé R., Michelet E., Soubigou M.-L. (2019). « Initiatives institutionnelles et libérales de partenariat en Bretagne », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et éco-évaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 78-106.
De la Tribonnière X., Pellecchia A., Gross O., Trin Dinh L., Ragain-Gire F., Lartiguet P., Bringer J. (2019) « Former ensemble des patients et des professionnels de santé à la coanimation en ETP et au coenseignement en santé : 2 années d’expérience du DU « Se former au partenariat patient – professionnel de santé »in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 107-130.
ANEMF, Association Nationale des Etudiants en Médecine de France (2019). « Démocratie sanitaire : Quelles perspectives pour la place des patients dans la formation? », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 131-133.
Cerisey C., Le Floch C. pour Associons nos savoirs (2019), « Comment s’organiser en partenariat: Associons nos savoirs » in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 134-140.
Voyen M., Böhme P., Germain L., Pétr B., Younsi M., Mathieu J., Ziegler O., Nguyen-Thi P.L. (2019). « Connaissance, perception et définition du concept « Patient Partenaire de Soins » : Qu’en pensent les professionnels de santé impliqués en éducation thérapeutique ? Résultats d’une enquête nationale. », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 335-359.
Louis G., Voz B., Charlier N., Guillaume M., Pétré B., consortium APPS, (2019). « Analyse de l’évolution et de l’état actuel du cadre politico-juridique influençant l’engagement du patient dans le système de soins belge », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 360-377.
Lartiguet P., Broussal D., Saint-Jean M. (2019). «Opérationnalisation du partenariat de soin avec les patients : mise en œuvre d’une recherche-intervention en Occitanie », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 382-400.
Nguyen-Thi P.L., Voyen M., Germain L., Böhme P., Pétré B., Breinbauer M., Scholtes B., Moukah D., Younsi M., Ziegler O. (2019). « Pratiques institutionnelles concernant l’Approche Patient Partenaire (APPS) en Lorraine », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 401-425.
Hejoaka F. (2019). « La recherche en santé n’est pas un long fleuve tranquille. Autoethnographie critique d’une patiente devenue anthropologue de la santé. » in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 426-437.
Touveneau S., Merkli S. (2019). « Patients Partenaires : Hôpitaux Universitaires de Genève (HUG) » in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 143-162.
Mabire C., Christie P., Perrenoud B., Lehn I., Girard H., Bula C. (2019). « Le CHUV, Hôpital ami des aînés: implantation du modèle du patient comme partenaire pour les aînés hospitalisés »in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 163-177.
Daix C., Ragain-Gire R., Lartiguet P., Pagnon A., Szapiro N., Laporte C., Battesti M.-P. (2019). « Etat des lieux de l’implication des patients partenaires dans la région Occitanie », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 178-191.
Anhorn P., Chinet M., Devaux L. (2019). « Le projet anticipé des soins – Un PAS du réseau vers le partenariat », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 192-204.
Balez E., Association François Aupetit (AFA), (2019). « MICI CONNECT, 1ère plateforme d’accompagnement personnalisé pour les malades de Crohn et de rectocolite hémorragique », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 205-240.
Basset E., Greffier C. (2019). « La fabrique créative de santé: dispositif du Parcours de soins des personnes touchées par la maladie chronique », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 241-259.
Blanchard D., Caillette-Beaudoin A. (2019). « La qualité de la relation de soin comme pivot pour la réalisation et le succès des soins au domicile. », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 260-281.
Monboussin S., Balez E., Devos C., Vié A., Association François Aupetit (AFA), (2019). « Projet d’e-ETP sur la plateforme MICI Connect », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 282-305.
Guelle B. Guyet D. (2019). « Le patient partenaire pédagogique : Un atout pour l’enseignement du raisonnement clinique en formation initiale de masso-kinésithérapie ». Kinésithérapie Scientifique, N° 613, pp. 5-14
Ovretveit J., Degsell E. (2019). « Implemeting patient and carer participation in self-Care and Co-ccare in Sweeden : policy, practice and the future of person-centred Care », in M.-P. Pomey, J.-L. Denis, V. Dumez (Eds.), Patient Engagement : How Patient-provider Partnerships Transform Healthcare Organizations : Springer International Publishing, pp. 63-89.
Maurer M., Dardress P., Bristol Rouse T. (2019). « Patient ad family engagement in the United States : a social movement frome patient to advocate to partner » », in M.-P. Pomey, J.-L. Denis, V. Dumez (Eds.), Patient Engagement : How Patient-provider Partnerships Transform Healthcare Organizations : Springer International Publishing, pp. 91-128.
Matthews R., Greenn S., Myron R., French C., Berbber C., Matthhews D., Jayacodi S., Trite J., Brown A., Baker J., Bluston ., Grant R., Straus J., M ballerand R., Hoffman M., Husson F., Fischer L., Cherelle A. (2019). « Conections : te power of learning together to improve healthcare in the United Kingdom » », in M.-P. Pomey, J.-L. Denis, V. Dumez (Eds.), Patient Engagement : How Patient-provider Partnerships Transform Healthcare Organizations : Springer International Publishing, pp. 129-167.
Braithwaite J., Churruca K., Wells L., Rapport F., Lawson T., Arro P., Watson J. (2019). « Partnering with patients for chage and improvement : an Autralian perspective », in M.-P. Pomey, J.-L. Denis, V. Dumez (Eds.), Patient Engagement : How Patient-provider Partnerships Transform Healthcare Organizations : Springer International Publishing, pp. 169-197.
Le Cam Y., Bolz-Johnson M. (2019). « Expert by experience : valuing patient engagemennt in healthcare », », in M.-P. Pomey, J.-L. Denis, V. Dumez (Eds.), Patient Engagement : How Patient-provider Partnerships Transform Healthcare Organizations : Springer International Publishing, pp. 233-267.
Pétré B., Scholtes B., Voz B., Ortiz I., Gillain N., Husson E., Guillaume M., Bragard I., Consortium APPS (2019) « L’Approche Patient Partenaire de Soins en question ». Rev Med Liege 2018; N°73 : V.12, pp. 620-625
Ortiz Halabi A., Scholtes B., Voz B. , Gillain N., Durieux N. , Odero A., Baumann M. , Ziegler O. d , Gagnayre R. , Guillaume M., Bragard I., 1 , Pétré B. (2019). “Patient participation” and related concepts: A scoping review on their dimensional ». Patient Education and Counseling, Vol. 103, Issue 1, 2020/01, pp. 5-14.
Maurer M., Dardess P., Rouse T.B. (2019). « Patient and Family Engagement in the United States: A Social Movement from Patient to Advocate to Partner ». In M.-P. Pomey, J.-L. Denis, V. Dumez (Eds.), Patient Engagement : How Patient-provider Partnerships Transform Healthcare Organizations : Springer International Publishing, pp. 91-128
Grosjean S., Bonneville L., Redpath C. (2019). « Le patient comme acteur du design en E-Santé : participatif d’une application mobile pour patients cardiaques ». Sciences du Design — 09 — Mai 2019, pp. 66-83.
Lefebvre H., Levert M.-J., Larrivière M., Proulx M., Lecocq D. (2019). « For research rooted in the everyday reality of patient experience ». Applied Nursing Research, https://doi.org/10.1016/j.apnr.2019.05.015
Zhao G., Kennedy C., Mabaya G., Okrainec K., Kiran T (2019). « Patient engagement in the development of best practices for transitions from hospital to home: a scoping review ». Vol.9, N°8, BMJ Open 2019;9:e029693. doi:10.1136/bmjopen-2019-029693
Pomey M.-P., Brouillard P., Gaache I., Lambert L., Boothroyd L., Collette C., Bédard S., Grégoire A., Pelaez S., Demers‐Payette O., Goetghebeur M., De Guise M., Roy D (2019).« Co‐construction of health technology assessment recommendations with patients: An example with cardiac defibrillator replacement ». Health Expectations, 2/10/2019, DOI: 10.1111/hex.12989
Barrier P. (2019). « Regard d’un philosophe ancré dans l’expérience de la vie avec la maladie ». Santé Éducation – Vol.29 – 2019 – Numéro spécial Congrès, pp. 7-9.
Guelle B., Guyet D. (2019). « Le patient partenaire pédagogique. Un atout pour l’enseignement du raisonnement clinique en formation initiale de masso-kinésithérapie ». Kinésithérapie Scient. N° 613, pp. 5-14
Breton H., Bernard M.-C., Robin J.-Y. (Coord.). (2019). Chemins de la formation, Hors série, Vivre la maladie, entre épreuves, récits et histoire, Paris : L’Harmattan, Université de Tours.
Vicherat V. (2019). »Les savoirs expérientiels des patients – Vers un rééquilibrage entre expertise scientifique et expertise profane ? », in, Chemins de la formation, Hors série, Vivre la maladie, entre épreuves, récits et histoire, Paris : L’Harmattan, Université de Tours. pp. 29-42
Rossi S. (2019). » De la mise en récit du cancer au partage des savoirs : K, histoires de crabe, un blog autopathographique », in, Chemins de la formation, Hors série, Vivre la maladie, entre épreuves, récits et histoire, Paris : L’Harmattan, Université de Tours. pp. 57-68.
Baeza C. (2019). « Transformations silencieuses des savoirs dialogiques de la chercheure en recherche biographique », in, Chemins de la formation, Hors série, Vivre la maladie, entre épreuves, récits et histoire, Paris : L’Harmattan, Université de Tours. pp. 71-84.
Leray C. (2019). « Savoir mettre des mots sur ses maux pour re-vivre », in, Chemins de la formation, Hors série, Vivre la maladie, entre épreuves, récits et histoire, Paris : L’Harmattan, Université de Tours. pp. 131-144.
Dominicé P. (2019). « Du silence de la souffrance à la parole des patients », in, Chemins de la formation, Hors série, Vivre la maladie, entre épreuves,
récits et histoire, Paris : L’Harmattan, Université de Tours. pp. 147-162.
Tourette-Turgis C. (2019). L’apport des malades à l’amélioration de l’organisation des soins: vers une science participative en nutrition, Nutrition Clinique et Métabolisme, Vol. 33, N°4, novembre 2019, pp. 290-294
Clavel N., Pomey M.P., Ghadiri D. P. S. (2019). « Partnering with patients in quality improvement: towards renewed practices for healthcare organization managers? ». BMC Health Serv Res 19, 815 (2019). Https://doi.org/ 10.1186 / s12913-019-4618-8.
Bose R., Saxon L. A. (2019). « The democratization of diagnostics : bringing the power of medical diagnosis to the masses ». The lancet : eclinical medicine, march 12, 2019, Vol. 8, pp. 6-7, doi : https://doi.org/10.1016/j.eclinm.2019.03.004
Noël-Hureaux E. (2019). « De l’expérience singulière médiatisée de la maladie à la construction de savoirs expérientiels ». Recherche en soins infirmiers, 2019/3, ° 138, pp. 65-74.
Pereira-Paulo L., Tourette-Turgis C. (2019). La construction de la maladie chronique et du sujet malade comme objet de recherche dans les sciences humaines et sociales. Carnets de recherche sur la formation, Paris : Centre National des Arts et Métiers, pp. 1-9 (Accessible sur HAL, Archives Ouvertes)
Tourette-Turgis, C., Pereira-Paulo, L., Vannier, M-P. (2019). Quand les malades transforment leur expérience du cancer en expertise disponible pour la collectivité, l’exemple d’un parcours diplômant à l’université des patients. Vie Sociale, n° 25-26, 159-177.
Saout C. (2019). « L’engagement des usagers en santé : un cours nouveau ? ». Revue française des affaires sociales, 2019/3, pp.125-133
Sarradon-Eck A. (2019). « Le patient contemporain« . Cancer(s) et Psy(s), ERES, n° 4 (1), pp.51
Fabien-Groud P. (2019). « Inclure les savoirs expérientiels pour améliorer la relation de soin et la formation des professionnels de santé ». Vie Sociale. N° 25-26, pp. 291-302.
Camilien, M., Simard, I., Tétreault, B., Pomey, M-P. (2019). Le Partenariat de soins et services avec les usagers au CISSS de Laval : qualité ou performance ?, Le Point en santé et services sociaux éducation, volume 14, no. 3, hiver 2019
Rat C., Peteuil A., Reynaud M., Millot I., Carpentier C., Soudry-Faure A. Denis F. (2019) « Un partenariat patients schizophrènes-soignants pour conduire un programme d’éducation en santé orale », Santé Publique, 2019/3 (Vol. 31), pp. 405-415. DOI : 10.3917/spub.193.0405
Rahimi S, Zomahoun HTV, Légaré F. (2019) « Patient Engagement and its Evaluation Tools- Current Challenges and Future Directions Comment on «Metrics and Evaluation Tools for Patient Engagement in Healthcare Organization- and System-Level Decision-Making: A Systematic Review». Int J Health Policy Manag. 2019;8 (6):pp. 378-80.
Balcou-Debussche M. (2018). « Les « patients » sont-ils devenus « impatients » d’agir dans nos systèmes de santé ? » Médecine et santé tropicales , John Libbey Eurotext, 2018, 28 (4), pp.355-358.
Mougeot, F., Robelet, M., Rambaud, C., Occelli, P., Buchet-Poyau, K., Touzet, S., Michel, P. (2018). L’émergence du patient-acteur dans la sécurité des soins en France : une revue narrative de la littérature entre sciences sociales et santé publique. Santé Publique, 30, pp. 73-81.
https://doi.org/10.3917/spub.181.0073
Sebai, J. (2018). Participation citoyenne à l’amélioration de la qualité et de la sécurité des soins. Santé Publique, 30, pp. 623-631.
https://doi.org/10.3917/spub.186.0623
Boivin A., Richards T. Forsythe L., Alexandre Grégoire patient partner, L’Espérance A., Abelson J., Carman K. L. (2018). « Evaluating patient and public involvement in research If we are serious about involvement, we need to be equally serious about evaluation », BMJ. 2018;363:k5147 doi: 10.1136/bmj.k5147 (Published 6 December 2018)
Flora L. (2018). « D’une expérience de patient de soin initiatique à la participation aux mutations d’un système de santé ». Repères en gériatrie, Vol. 20, N° 164, pp. 93-96.
Jouet E., Las Vergnas O. (2018). « The place of “ patient engagement ” in Health Research: Bibliometrics and bibliographic contribution ». Archives ouvertes (HAL).
Touveneau S., Benichou A., Geissbuhler A., Merkli S. (2018). «Démarche relationnelle du partenariat entre patients et professionnels : conception et implémentation ». Revue médicale Suisse 2018 ; volume 14. pp.1533-1537.
Ewalds Mulliez AP, Pomey MP, Bordeleau J, Desbiens F, Pelletier JF (2018). «A voice for the patients: Evaluation of the implementation of a strategic organizational committee for patient engagement in mental health», PLOS ONE 13(10): e0205173.
Pomey, Marie-Pascale; Clavel, Nathalie; Aho-Glele, Ursulla; Ferré, Noemie; and Fernandez-McAuley, Paloma (2018) « How patients view their contribution as partners in the enhancement of patient safety in clinical care, » Patient Experience Journal: Vol. 5 : Iss. 1 , Article 7.
Bombard Y., G. Baker R., Orlando E, Fancott C., Bhatia P., Casalino S., Onate K., Denis J.-L., Pomey M.-P. (2018). « Engaging patients to improve quality of care: a systematic review ». Implementation Science (2018) 13:98 https://doi.org/10.1186/s13012-018-0784-z
Gardien E. Jaeger M. (2018). L’implication citoyenne dans la recherche. France : Erès.
Legrain S., Roelandt J.-L., Lefeuvre K. (dir). (2018). Le pouvoir d’agir « empowerment » des patients questionne l’éducation thérapeutique et ses acteurs. Restitution intégrale d’une recherche action avec les patients. Edition collective, Direction Générale de la Santé, Association française des hémophiles, CCOMS en santé mentale de Lille, Université Sorbonne cité, Université Diderot, Laboratoire Ecève, INSERM, EHESP.
Crocker J.C, Ricci-Cabello I., Parker A., Hirst J. A., Chant A., Petit-Zeman S., Evans D., Rees S. (2018). Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis. BMJ. 11/28, Open access: BMJ 2018; 363:k4738 | doi: 10.1136/bmj.k4738.
Fleury, C., Tourette-Turgis, C. (2018). « Une école française du soin ? Analyse de deux cas d’innovation thérapeutique : l’Université des Patients et la Chaire de Philosophie à l’Hôpital ». Le sujet dans la cité, 1(7), 183-196.
Roebotham T, Hawthornthwaite L, Lee L, Lingard LA. (2018). »Beyond catharsis: The nuanced emotion of patient storytellers in an educational role ». Medical Education. N° 52 (5),pp.526-535.
Tourette-Turgis, C., Gligorov, J., Fleury, C., Pelletier, JF. (2018). Après un cancer, inclure le rétablissement dans le parcours de soin. Soins, 824, 66-68.
Mulumba, M., London, L., Nantaba, J., Ngwena, C. (2018). « Using health committees to promote community participation as a social determinant of the right to health : Lessons from Uganda and South Africa ». Health and Human Rights Journal, 20(2), pp. 11‑18
Las Vergnas O. (2017). Patients’ participation in health research: a classification of cooperation schemes. J Particiatory Med. vol. 9, issue 1 | e16 | pp.1-9.
Tourette-Turgis, C. (2017). Parcours de vie, rupture de santé : Quand de maintenir en vie devient un projet. Vie sociale, 2(18), 91-104.
Tourette-Turgis, C., (2017). « Se rétablir, se mettre en rémission, se reconstruire : le rétablissement comme impensé dans le parcours de soin en cancérologie ». Le sujet dans la cité, 2(8), 223-238.
Flora L. (2017). Le partenariat patient : un nouveau modèle relationnel », Perspectives et Solidarités Sociales, N° 250, pp.54-55
Simon Senghor A. (2017). « Une figure originale : le chercheur impliqué comme malade chronique« . Anthropologie & santé. N° 14, https://doi.org/10.4000/anthropologiesante.2524
Martinent E., (2017) « la démocratie sanitaire, entre participation(s) et représentation (s) ». In « La participation des patients » (Dir. Hervé, Stanton Jean, Mamzer), Paris : Editions Dalloz, pp.63-104.
Valentin C. (2017). » La participation des patients dans le tiers monde : un acte d’autodétermination »? In « La participation des patients » (Dir. Hervé, Stanton Jean, Mamzer), Paris : Editions Dalloz, pp.37-50.
Laarabi K. V. (2017). « L’ »empowerment » du patient chronique et l transformation du système de santé ». In « La participation des patients » (Dir. Hervé, Stanton Jean, Mamzer), Paris : Editions Dalloz, pp. 105-124.
Marvanne P. (2017). » De celui qui endura… au patient chercheur! ». In « La participation des patients » (Dir. Hervé, Stanton Jean, Mamzer), Paris : Editions Dalloz, pp.125-134.
Jouet E., Las Vergnas O. (2017). » Contribution bibliographique et bibliométrique à l’étude de la place de l’engagement des patients dans le système de la recherche en santé ». In « La participation des patients » (Dir. Hervé, Stanton Jean, Mamzer), Paris : Editions Dalloz, pp.203-208.
Schaad B. (2017). » Quand le patient souffre à l’hôpital (et vice versa) ». In « La participation des patients » (Dir. Hervé, Stanton Jean, Mamzer), Paris : Editions Dalloz, pp.231-242.
Simon Senghor A. (2017). « Une figure originale : le chercheur impliqué comme malade chronique« , Anthropologie & Santé, Article en ligne, Doi : 10.4000/anthropologiesante.2524
Odell W,, Riahi S. (2017). « Leveraging Technology to Advance Patient Engagement in a Mental Health Care Setting ». eTELEMED 2017 : The Ninth International Conference on eHealth, Telemedicine, and Social Medicine, pp. 72-75.
Sium A., Lang A., MacLeod A., Ridout B., Steinke C., Francott C., Klavano D., Herold D., Wasylenko E., Gauvin F.-P., Mackean G., Popescu I., Houston J., Bradshaw J., Hodder J., Rees J., Rodgers J., Giesbrecht J., Checkley J., Birdsell J., Williams L., Thompson L., Bradford L., Keller M., Judd M., Pomey M.-P., Clavel N., McMullin N., Kattilakoski P., Kossey S., Nettleton S., Busca S. Owczar, MacDonald T., King T., Malloy-Miller T., Swartz T., Aho-Glele U. (2017) Engaging Patients in Patient Safety – a Canadian Guide. Last modified May 2017. Canadian Patient Safety Institute.
Pomey, M-P., Morin, E., Nault, C., Clavel, N., Beaumont, M., D’Amour, M. (2017). «Engager les patients à tous les niveaux de gouvernance : l’exemple du CIUSSS de la Mauricie-et-du-centre-du Québec», Le Point en Santé et Services Sociaux ;12(4), pp.12-17.
Herrin J, Harris KG, Kenward K, Hines S, Joshi MS, Frosch DL. (2016). “Patient and family engagement: a survey of US hospital practices”. BMJ Qual Saf. N° 25, Vol.3, pp. 182–189.
Koenig M. (2016). Le rétablissement dans la schizophrénie : un parcours de reconnaissance. Paris : Presses Universitaires de France.
Alary Patrick (2016). « Perspectives démocratiques en santé mentale de la rhétorique à la pratique : le patient, usager ou partenaire ? », Pratiques en santé mentale, 2016/2 (62e année), p. 5-14. DOI : 10.3917/psm.162.0005
Roelandt J.-L., Staedal B. (Dir), (2016). L’expérimentation des médiateurs de santé pairs : une révolution intranquille. Paris : John Libbey Eurotext.
Bureau-Point E. (2016). Les patients experts dans la lutte contre le sida au Cambodge : Anthropologie d’une norme globalisée. Marseille, Presses Universitaire d’Aix-Marseille.
Tourette-Turgis, C. (2015). L’éducation thérapeutique du patient : La maladie comme occasion d’apprentissage. Louvain La Neuve : De Boeck Supérieur.
Boivin A., Marcoux I., Garnon G., Lehoux P., Mays N., Premont M.-C., Chao Y.-S., Leeuwen E.-V., Pineault R. (2015), « Comparing end-of-life practices in different policy contexts: a scoping review », Journal of Health Services Research & Policy ; 0(0) ; 1–9 ; January 14, 2015 as doi:10.1177/1355819614567743
Irvine J, Molyneux J, Gillman M. (2015). Providing a Link with the Real World : Learning from the Student Experience of Service User and Carer Involvement in Social Work Education. Social Work Education. N°34 (2),pp.138-150.
Deschamp-Leroux C., Raphaël F.(Dir.) (2015), Santé mentale et guérison : regards croisés. Toulouse : Editions John Libbey, Eurotext.
Roelandt J.-L., staedel B., Raphaël F. Marsili M., François G., La Cardinal P., Desmons P. (2015). Programme Médiateurs de santé/pairs : apport final de l’expérimentation 2010-2014. Centre Collaborateur de l’OMS santé mentale Europe (CCOMS).
Flora L. (2015). « Du patient passif au patient expert », dans l’ouvrage (Dir. Deschamp-Leroux C., Raphaël F.), Santé mentale et guérison : regards croisés. Toulouse : Editions John Libbey, Eurotext, pp. 109-119
Greacen T., jouet E. (2015). » L’empowerment en santé mentale« . (Dir. Deschamp-Leroux C., Raphaël F.), Santé mentale et guérison : regards croisés. Toulouse : Editions John Libbey, Eurotext, pp. 91-100
Pelletier J.-F. (2015). « Que la révolution patient-usager-citoyen se poursuive ». Santé mentale au Québec, Vol. XL, N°1, Printemps 2015, pp. 11-18
Pelletier J.-F., Davidson L. (2015). « À l’origine même de la psychiatrie comme nouvelle spécialité médicale : le partenariat Pinel-Pussin ». Santé mentale au Québec, Vol. XL, N°1, Printemps 2015, pp. 19-34
Perreault M., Bouchard S., Lapalme M., Laverdure A., Audet D., Cusson J.-C., Zacchia C., Milton D., Tion M. S., Chartier-Otis M., Marchand A., Bélanger C. « Perspective de pairs aidants sur leur expérience d’animation d’un programme d’autotraitement du trouble panique ». Santé mentale au Québec, Vol. XL, N°1, Printemps 2015, pp. 35-52.
Godrie B. (2015). « L’autre côté de la clôture. Quand le monde de la santé mentale et de la rue rencontre la recherche ». Santé mentale au Québec, Vol. XL, N°1, Printemps 2015, pp. 67-80.
Ruelland I. (2015). « Les dispositifs de délibération en santé mentale et la démocratie des échanges entre les pairs : le cas de l’assemblée des usagers d’un centre d’attention psychosociale au Brésil ». Santé mentale au Québec, Vol. XL, N°1, Printemps 2015, pp. 153-170.
Demailly L., Garnoussy N. (2015). « Les rencontres entre médiateurs de santé pair et usagers de la psychiatrie en France : caractéristiques générales et effets du dispositif sur les représentations des usagers ». Santé mentale au Québec, Vol. XL, N°1, Printemps 2015, pp. 171-188
Demailly L., Garnoussy N.. (2015). « Les rencontres entre médiateurs de santé pair et usagers de la psychiatrie en France : effets thérapeutiques, limites et impasses ». Santé mentale au Québec, Vol. XL, N°1, Printemps 2015, pp. 189-202
Hervier, B., Magar, Y., Allab, F., Richard, K., Neves, Y., Danjou, S., … & Ayçaguer, S. (2015). Intervention des patients dans l’animation d’un programme d’éducation thérapeutique dédié au lupus systémique : définitions, mise en place et bénéfices. La Revue de Médecine Interne, 36(10), pp. 645-650.
Vigneault K., Higgins J., Pomey M.-P., Arsenault J., Lahaye V. (2015). «Bringing patient advisors to the bedside: a promising avenue for improving partnership between patients and their care team ». Patient eXpérience Journal, Vol.2, Issue 2, pp. 16-22.
Irvine J, Molyneux J, Gillman M. (2015). « Providing a Link with the Real World : Learning from the Student Experience of Service User and Carer Involvement in Social Work Education ». Social Work Education. N°34(2), pp. 138-150.
Flora L., Jouet E., Las Vergnas O. (2014), « Contribution à la cartographie des publications établissant le fait social de la reconnaissance des savoirs des malades », dans, (Coord. : Jouet E., Las Vergnas O., Noel-Hureaux E.), Nouvelles interventions réflexives dans la recherche en santé : du savoir expérientiel des malades aux interventions des professionnels de santé, Paris, Archives contemporaines, pp. 235-236.
Jouet E. (2014), « La reconnaissance des savoirs des malades : de l’émergence au fait social », dans Nouvelles interventions réflexives dans la recherche en santé : du savoir expérientiel des malades aux intervention des professionnels de santé, Paris : Archives contemporaines, pp. 9-21.
Flora L. (2014). »L’émergence du patient-expert. Une nouvelle figure dans le champ de la santé ». dans l’ouvrage (Dir. Ferrand-Bechmann D., Raybaud Y.), L’engagement associatif dans le domaine de la santé, Paris : L’Harmattan, pp. 17-32
Jouet E., Las Vergnas O., Noel-Hureaux E. (Dir.) (2014). Nouvelles interventions réflexives dans la recherche en santé : du savoir expérientiel des malades aux interventions des professionnels de santé. Paris, Archives contemporaines.
Boivin A., Lehoux P. Al Lacombe R., Burgers J., Grol R. (2014), « Involving patients in setting priorities for healthcare improvement: a cluster randomized trial », Implementation Science ; 2014, pp. 9-24.
Pereira Paulo, L., Tourette-Turgis, C. (2014). De l’accès à l’expérience des malades à la professionnalisation de leur activités : reconnaître le care produit par les malades. Le sujet dans la cité, 2(5) : 150-159.
Bureau E., Hermann-Mesfen J. (2014). « Les Patients Contemporains face à La Démocratie Sanitaire ». Introduction Au Dossier [En Ligne]. ». Anthropologie & Santé, pp. 0–18
Boivin A., Lehoux P. ? Lacombe R., Burgers J., Grol R. (2014), « What Are the Key Ingredients for Effective Public Involvement in Health Care Improvement and Policy Decisions? A Randomized Trial Process Evaluation », The Milbank Quarterly, Vol. 92, No. 2, 2014, pp. 319-350.
Godlee F. (2014) « Towards the patient revolution », BMJ. January 29 ; 348 doi: http://dx.doi.org/10.1136/bmj.g1209
Barrier P. (2014). Le patient autonome, Presses Universitaires de France.
Las Vergnas O. (2014). « Réflexivité des malades et dialogues entre phénoménologies pragmatiques et épistémologies académiques » In, Nouvelles coopérations réflexives en santé, Editions des archives contemporaines, Chapitre 7, pp 101 – 135
Menichetti J., Libreri C., Lozza E., Graffigna G. (2014). Giving patients a starring role in their own care: a bibliometric analysis of the on-going literature debate. Health Expect. 19, pp. 516–526
Tourette-Turgis, C., Thievenaz, J. (2014). L’éducation thérapeutique du patient : champ de pratique et champ de recherche. Savoirs, 2, 35, 9-48.
Gross O. (2014), Experts et expertise : le cas des patients : Contribution à la caractérisation du patient expert et de son expertise, thèse de doctorat en santé publique, Université Paris 13, PRES Sorbonne Paris Cité.
Flora L. (2013), « Méthodologie de recherche dans le cadre d’une thèse sur le patient formateur : élaboration théorique et pratique d’un nouveau métier de la santé. », Recherche qualitative, hors série N°15, Université de trois rivières, Québec, pp.166-185.
Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, et al. (2013) « Patient an family engagement: a framework for understanding the elements and developing interventions and policies ». Health Affairs, (Millwood). 2013; N°32, Vol. 2, pp. 223-231.
Dentzer, S. (2013). Rx For The ‘Blockbuster Drug’ Of Patient Engagement. Health Affairs. 32:202.
Richards T., Montori V. M., Godlee F., Lapsley P., Dave Paul D. (2013), « Let the patient revolution begin : Patients can improve healthcare: it’s time to take partnership seriously », BMJ, 2013; 346: f2614 doi: 10.1136/bmj.f2614
Bechtel C., Sweeney J., Carman K.L., Dardess P., Maurer M., Sofaer S., Adams K. (2013). « Patient and family engagement: a framework for understanding the elements and developing interventions and policies », Health Affairs, 32, no.2, pp. 223-231
Flora L. (2013), « Des patients en formation avec des professionnels de santé en faculté de médecine : un nouveau paradigme à l’aube de la loi HPST ? », Le bulletin juridique du praticien hospitalier, éditions Les études hospitalières, N° 154, janvier 2013, Dossier, pp.1-4
Flora L. (2013), « Savoirs expérientiels des malades, pratiques collaboratives avec les professionnels de santé : état des lieux. », Éducation permanente. 2013 ; N° 15: pp.59-72.
Jouet E. (2013), « Faire de sa maladie un apprentissage. L’exemple du projet Emilia », Education permanente, No. 195, 2013/06, pp. 73-84.
Thievenaz J., Tourette-Turgis C., Khaldi C. (2013). » Analyser le travail du malade : nouveaux enjeux pour la formation et la recherche en éducation thérapeutique ». Education permanente, No. 195, 2013/06, pp. 47-58.
Rothier Bautzer E. (2013). » L’autonomime du malade chronique, enjeu de onuvelles coopérations interprofessionnelles », Education permanente, No. 195, 2013/06, pp. 109-120.
Delory-Monberger CC. (2013). » Expérience de la maladie et reconfigurations biographiques ». Education permanente, No. 195, 2013/06, pp. 121-132.
Le Cardinal P., Roelandt J.-L., Rafael F., Vasseur-Bacle S., Francois G., Marsili M. (2013). Pratiques orientées vers le rétablissement et pair-aidance : historique, études et perspectives, L’Information psychiatrique, 89: pp. 365–370.
Tourette-Turgis, C. (2013). « L’université des patients : une reconnaissance institutionnelle des savoirs des malades ». Le sujet dans la cité, 4, 174-186
Tourette-Turgis C. (Dir.) (2013), Apprendre du malade, Éducation permanente. N° 15: pp. 59-72.
Towle, A., Godolphin, W. (2013). Patient involvement in medical education. Oxford University Press.
Legare, F., S. Turcotte, D. Stacey, S. Ratte, J. Kryworuchko et ID Graham. (2012). « Perceptions des patients à l’égard du partage des décisions: une revue systématique des interventions pour améliorer la prise de décision partagée dans la pratique clinique de routine ». Patient 5 (1), pp. 1-19.
Greacen T., Jouet E. (2012), Pour des usagers de la psychiatrie acteurs de leur propre vie, Toulouse, Erès.
Barello, S., G. Graffigna and E. Vegni (2012). « Patient Engagement as an Emerging Challenge for Healthcare Services: Mapping the Literature. ». Nursing Research and Practice, N°2, pp. 1-7.
Doucet S., Andrews C., Godden-Webteir A. L., Lauckner H., Nasser S., (2012), « The Dalhousie Health Mentors Program: Introducing students to collaborative patient/client-centered practice », Journal of Interprofessional Care, N° 26, pp.336–338.
Sarradon-Eck A., Farnarier C., Girard VC., Händlhuber H., Lefebvre C., Simonet E., Staes B. (2012).« Des médiateurs de santé pairs dans une équipe mobile en santé mentale. Entre rétablissement et professionnalisation, une quête de légitimité ». Lien social et Politiques, no 67, printemps, pp. 183-199.
Coulter A. (2011). Engaging patients healthcare. University of Oxford, UK, Open University Press.
Jouet E., Flora L., (2011) « Empowerment et santé mentale : le contexte et la situation en France », La santé de l’homme, Paris, INPES, N° 413, mai juin 2011, pp. 12-15.
Flora L. (2011), « Acteur, auteur de sa santé jusqu’au dernier souffle », Revue Générale de Droit Médical, N° 38, mars, pp. 239-253.
Brosseau, M. Verma, J. (2011). Engaging patients to improve healthcare quality. Healthcare Quality, N° 14, Vol. 3, pp. 16-18.
D’ivernois J.F., Gagnayre R., Albano M.G., Alessis C., Banoun L., Barrier P., Baud D., Blanc X., Boske M., Cirette B., Diancourt S., Feutrier C., De Gayffier B., Gedda M., Giauffret F., B. Ginières, C., Guérois C., Guiraud M., Iguenane J., Léonard D., Le Tallec C.,. Malaval M.-T, Marchand C., Martinand A., M’Bemba J., Pauchet-Traversat A.-F., Pichon K., Pinosa C., Sohier N., Traynard P-Y., Vagnarelli S., Vaillant G., Zito F. (2011). « Compétences d’adaptation à la maladie du patient : une proposition », Educ Ther Patient/Ther Patient Educ, 2011; Vol. 3, N° 2: pp.201-205
Repper J, Carter T, (2011), « A review of the litterature on peer support in mental health services », Journal of Mental Health, N° 20 Volume 4, pp. 392–411. Nottingham, UK.
Dupont S., Le Cardinal P., Marsili M., François G., Caria A., Roclandt J.-L. (2011), « Intégrer d’anciens usagers aux équipes soignantes en santé mentale : Une expérience pilote », La santé de l’homme, Paris, INPES, N°413, mai-juin 2011, pp. 32-33.
Barrier P. (2010), La blessure et la force: La maladie et la relation de soin à l’épreuve de l’autonormativité, Paris, Presses Universitaires de France.
Jouet E., Flora L. (Coord.) (2010), Usager-expert : La part de savoir des malades dans le système de santé, Pratiques de formation : Analyses, N°58/59 (2010), Saint-Denis, Université Paris 8.
Jouet E., Flora L., Las Vergnas 0. (2010). « Construction et Reconnaissance des savoirs expérientiels ». Note de synthèse du N°, Pratique de formation : Analyses, N°58/59, Saint Denis, Université Paris 8, pp. 13-94.
Lagueux N,. Harvey D., Provencher H. (2010). « Quand le savoir expérientiel influence nos pratiques… L’embauche de pairs aidants à titre d’intervenants à l’intérieur des services de santé mentale ». Pratiques de formation – Analyses 2010 ; 58/59 : pp.155-174.
Akleh Y., Cartuyvels S., Romero P. (2010).Le Collectif « Pratiques en santé mentale communautaire », Pratique de formation : Analyses, N°58/59, Saint Denis, Université Paris 8, pp. 205-228.
McCaffery K. J., Smith S. K., Wolf M. (2010), « The Challenge of Shared Decision Making Among Patients With Lower Literacy: A Framework for Research and Development », Medical decision making, Jan-feb 2010,
pp. 35-38.
Tourette-Turgis C. (2010), « Savoirs de patients, savoirs de soignants : La place du sujet supposé savoir en éducation thérapeutique ». Pratiques de formation : Analyses. N°58/59, pp.135-151.
Fainzang S. (2010), « Le pouvoir du patient face au médecin : Entre expérience, compétence et savoir », in (coord. Jouet E, Flora L.), Pratiques de Formation : Analyses, N° 57/58, pp. 123-134.
Basset T, Faulkner A, Repper J, Stamou E. (2010). La voix tracée par l’expérience vécue : le soutien par les pairs en santé mentale (traduction autorisée de Lived Experience Leading The Way : Peer Support in Mental Health). Association québécoise pour la réadaptation psychosociale.
Dierks M.-L. (2010), « Enseignement de l’étranger : L’université des patients, une initiative à engager en France ? L’exemple Allemand », In, 1er congrès des représentants des usagers. Annales, Paris, Fédération de l’hospitalisation privée-Médecine de chirurgie obstétrique (FHP-MCO), pp.29-33.
Davidson L., Rakfeldt J., Strauss J. S. (2010) The roots of the recovery movement: lesson learned, London : Wiley-Blackwell.
Slade, M. (2009). Personal Recovery and mental illness : A guide for mental health professionals. Cambridge University Press.
Las Vergnas O. (2009), « Construction du savoir expérientiel des malades, et rapport aux savoirs des adultes non scientifiques », Recherche en communication », N°32, p.13-33.
Jouet E. (2009). « Le savoir expérientiel dans le champ de la santé mentale : le projet Emilia ». Recherche en communication », N°32, pp.35-52.
Reach G. (2009). « Une critique du concept de patient-éducateur ». Médecine des maladies métaboliques. Vol. 3, n° 1, p. 89-94.
Simonet, M. 2009. «Les experts associatifs, entre savoirs profanes, militants et professionnels ». Dans : D. Demazière, C. Gadéa (dir. publ.). Sociologie des groupes professionnels : acquis récents et nouveaux défis. Paris, La Découverte, p. 274-284.
Akrich M. ; Nunes J. ; Paterson F. ; Rabeharisoa V. (dir.). 2008. La dynamique des associations de patients en Europe. Paris, Presses de l’Ecole des Mines.
Galanter M. (Dir.) (2008), Recent Developments in Alcoholism: Research on Alcoholics Anonymous and Spirituality in Addiction Recovery, Volume 18, New-York: Springer-Verlag.
Barrier P. (2007), L’autonormativité du patient chronique, Thèse de doctorat en Lettres et Sciences humaines, Université René Descartes, Paris 5.
Rabeharisoa V. (2007). « En quoi l’engagement des associations de malades dans la recherche renouvelle-t-il les formes de participation et de contestation sociale ? ». Dans : V. Tournay(dir. publ.). La gouvernance des innovations médicales. Paris, Presses Universitaires de France, p. 203-220.
Aujoulat I., Marcolongo R., Bonadiman L., Deccache A. (2006). « Patient empowerment: a process of separating and reconciling conflicting identities, which involves a search for security, mastery and coherence». Soc. Sci. & Med.
Jahng, K. H., Martin, L. R., Golin, C. E., DiMatteo, M. R. (2005) “Preferences for medical collaboration: patient– physician congruence and patient outcomes”. Patient education and counseling, 57(3), pp. 308-314.
Brun N., Lascoumes P. (2002), « Les grands secteurs associatifs à l’hôpital, l’action des usagers et de leurs associations nouveaux facteurs de qualité ? », Revue hospitalière de France, n°484, pp. 14-17.
Charles C., Whelan T., Gafni A. (1999) « What do we mean by partnership in making decisions about treatment? », BMJ, 18 september 1999 ; N° 319, pp.780-782.
Education entre pairs
Kangasjarvi, E., Forsey, J., Simpson, J. S., Ng, S. L. (2024). « We’re back in control of the story and we’re not letting anyone take that away from us » : Patient teacher programs as means for patient emancipation. Advances in Health Sciences Education : Theory and Practice, 29(2), 487‑505. https://doi.org/10.1007/s10459-023-10255-6
Vainauskienė, V., Žemaitaitienė, G. (2024). The dynamics of knowledge sharing in chronically ill patient-led online health communities. The International Journal of Health Planning and Management, 39(2), 397‑416. https://doi.org/10.
Andleeb, H., Currie R., Haider F., Hazzard R., Pinfold V., Thompson R., Mesarič A., Parker J, Richmond L. Mackay T.(2023). Understanding the Value Base That Supports the Development of Peer Support Relationships. in : Boden-Stuart, Z., Larkin, M. (éd.) Relationship and mental health. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-031-50047-3_7
Haun, M., Adler Ben-Dor, I., Hall, C. Khala J. Korde P., Moran G. Müller-Stierlin A. S., Niwemuhwezi J., Nixdorf R., Puschner B., Ramesh M., Charles A., Krumm S. (2024). Perspectives of key informants before and after implementing UPSIDES peer support in mental health services: qualitative findings from an international multi-site study. BMC Health Serv Res 24, 159. https://doi.org/10.1186/s12913-024-10543-w
Kim, S.-Y.; Kweon, Y.-R. (2024). The Poetry of Recovery in Peer Support Workers with Mental Illness: An Interpretative Phenomenological Analysis. Healthcare. 12, 123. https://doi.org/10.3390/ healthcare12020123
von Peter S., Kraemer U.-M., Cubellis L., Fehler G. , Ruiz‐Pérez G., Schmidt D. , Ziegenhagen J., Kuesel M. , Ackers S., Mahlke C., Nugent L., Heuer I. (2023) Implementing peer support work in mental health care in Germany: The methodological framework of the collaborative, participatory, mixed‐methods study. Health Expectation. février 2024 ; 27(1) : e13938. doi: 10.1111/hex.13938
Aftab A., Collings S., Jones N. (2023). Boundary Flexibilities in Mental Health Peer Support: The Peer Perspective. Journal of Psychosocial Rehabilitation and mental health. 74 (2), 112-118.
Sinigaglia S. (2023). EPoP : une démarche pour développer l’intervention par les pairs, in L’expérience dans l’innovation en santé modes éphémères ou nouveau paradigme ? (dir. Flora, Grenier Ponsignon): London: Iste, pp. 205-234.
Miyamae, F., Sugiyama, M., Taga, T., Okumara T. (2023). Peer support meeting of people with dementia: a qualitative descriptive analysis of the discussions. BMC Geriatr 23, 637 . https://doi.org/10.1186/s12877-023-04329-8
Reeves V., Loughhead M., Halpin M. A., Procter N. (2023). Organisational Actions for Improving Recognition, Integration and Acceptance of Peer Support as Identifed by a Current Peer Workforce. Community Mental Health Journal. 18 August: https://doi.org/10.1007/s10597-023-01179-x
Middleton R., Metusela C, Marriott‐Statham K., Ferguson C., Davidson P. M. (2023). The engagement of older people living with chronic lung disease in a peer support community‐based exercise programme: A qualitative study. Health Expectations. 3 August;1–9. doi/pdf/10.1111/hex.13847
Kangasjarvi, E., Forsey, J., Simpson, J. S., Ng, S. L. (2023). « We’re back in control of the story and we’re not letting anyone take that away from us » : Patient teacher programs as means for patient emancipation. Advances in Health Sciences Education : Theory and Practice. https://doi.org/10.
Mendoça Corradi-Webster C., Reis G., Brisola E. B. V., De paula Ajuro C. N., Ricci Z. C., Sicarino Rufato L., Andrade Sampaio C., Rezende Andrade M. C., Orsi J. A., Sarno Oliveira R. A., Cidade A. L., Campos P., Costa M. N. (2023). Peer support in Brazil: experiences and strategies of inclusion, empowerment and citizen. Journal of public Mental Health, 28 july 2023: https://doi.org/10.1108/JPMH-10-2022-0105
Romano V. (2023). Peer support after exposure to trauma: an evaluation. Paramedic practice, Vol. 15; N°7; 4 Jul. 2023
https://doi.org/10.12968/jpar.2023.15.7.286
Granier J.-M. (2023). Une vie au service des communautés thérapeutiques. Swap, N° 104, pp. 21-24.
Fryxélius A. (2023). POS0202 – Pare chronically active a patient empowerment program with Peer support? BMJ Journals : Anals of the Rheumatic Disease. Cool 82, S1, 326-327
Loubière, S., Loundou, A., Auquier, P., Tinland, A. (2023). Psychiatric advance directives facilitated by peer workers among people with mental illness: Economic evaluation of a randomized controlled trial (DAiP study). Epidemiology and Psychiatric Sciences, 32, E27. doi:10.1017/S2045796023000197
Evans, M. (2023). Diversity in Programmatic Features, Peer Support Strategies, Potential Mechanisms, and Outcomes. In: Peer Support Services Reaching People with Schizophrenia. Springer, Cham. https://doi.org/10.1007/978-3-031-29042-8_7
Cooper A., Jenkin G., Morton E., Peterson D., McKenzie S. K. (2022): ‘We have to band together’: service user experiences of naturally occurring peer support on the acute mental health unit, Kōtuitui: New Zealand Journal of Social Sciences Online, DOI: 10.1080/1177083X.2022.2093230
Prestel T. (2004), « L’Université des patients en traitement », La santé de l’homme, Paris, INPES, n°373, pp 4-6.
Barbot J. (2002), Les malades en mouvements. La médecine et la science à l’épreuve du Sida, Paris, Balland.
Lorig, K., P. Ritter, A. Stewart, D. Sobel, B. Brown, A. Bandura, V. González, D. Laurent and H. Holman (2001). « Chronic Disease Self-Management Program: 2-Year Health Status and Health Care Utilization Outcomes. ». Medical Care. 39(11): 1217-1223.
ONUSIDA. Rapport de l’ONUSIDA : Éducation par les pairs et VIH/SIDA : concepts, utilisations et défis. Genève : ONUSIDA, 2000.
Lorig K., et al. (1999), Chronic Disease Self-Management Course Leader’s Manual. Palo Alto, CA : Standford Patient Education Research Centre.
Brown P. (1997), « Popular Epidemiology Revisited » Current Sociology, Vol. 45, No. 3, pp. 137- 156.
Epstein S. (1996), Histoire du SIDA, 2 tomes, Paris, Les empêcheurs de tourner en rond (édition 2001), Impure Science, Aids, Activism and the politics of knowledge, Berkeley et Los Angeles, University of California press.
Rabeharisoa V., Moreira T, Akrich M. (1994). « Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society ». BioSocieties, vol. 9, pp.111–128
Anthony W. (1993), « Recovery from mental illness: the guiding vision of the mental health service system in the 1990’s, Academic Search Premier ». Psychosocial Rehabilitation Journal, vol. 4, n° 16 : p. 11-23.
Romeder J.-M. (1989), Les groupes d’entraide et la santé, Conseil Canadien de développement social, Ottawa, Canada.
Fox N., Ward K. (2006), « identities: from expert patient to resisting consumer« . Health:, 2006, 10 (4), pp.461-479.
Lorig K., et al. (1985), « Outcomes of self-help education for patients with arthritis », Arthritis and Rheumatism, vol. 28, N°6, pp. 680-685.
People with aids ‐PWA (1983), Les principes de Denver.
Morton A. Lieberman, Leonard D. Borman and al. 1979, Self-help groups for coping with crisis, Jossey-Bass.
Bibliographie sur l’implication des patients dans la recherche et la recherche sur l’implication des patients
Voz, B., Pétré, B., Orianne, J.-F. (2024). Improving the hospital or immunizing its organization ? Patient and public involvement at the service of quality. Frontiers in Sociology, 9, 1444955. https://doi.org/10.3389/fsoc.2024.1444955
Bauquier, C., Pannard, M., Andrin, A., Biaudet, J., Parnalland, S., Dabakuyo, S., Guillemin, F., Paret, G., Jacob, G., Préau, M. (2024). Fostering patients’ participation in oncology research by developing psychological empowerment and a sense of community. Journal of Epidemiology and Population Health, 72(6), 202781. https://doi.org/10.1016/j.jeph.2024.202781
Elonge, E., Cooke, C. E., Lee, M., Tang, V., Haynes, J.-A., Wang, S., Genuit, A., Isetts, B., Pellegrin, K., Mikami, J., Price, D., Brandt, N. (2024). Co-designing Medication Optimization Patient-Centered Outcomes Research With Older People and Caregivers as Research Partners. The Senior Care Pharmacist, 39(11), 425‑431. https://doi.org/10.4140/TCP.n.2024.425
Gaber, S. N., Guerrero, M., Rosenberg, L. (2024). Participatory research approaches in long-term care facilities for older adults : A meta-ethnography. International Journal of Qualitative Studies on Health and Well-Being, 19(1), 2431449. https://doi.org/10.1080/17482631.2024.2431449
Jackson-Perry, D., Cart-Richter, E., Haerry, D., Ahmeti, L., Bieri, A., Calmy, A., Ballif, M., Pasin, C., Notter, J., Amstutz, A. (2024). Patient and public involvement in HIV research : A mapping review and development of an online evidence map. Journal of the International AIDS Society, 27(11), e26385. https://doi.org/10.1002/jia2.26385
Johnson, E. E., Uteh, C. O., Belilios, E., Pearson, F. (2024). Reporting of Patient and Public Involvement in Technology Appraisal and Assessment Reports : A Rapid Scoping Review. The Patient. https://doi.org/10.1007/s40271-024-00721-7
Owrid, O., Richardson, L., Allan, S., Grant, A., Gogan, S., Hamilton, N., Yanga, F., Sirey, N., Syrett, S., Garety, P., Craig, T., Clancy, M., Pinfold, V., Miller, L., Ward, T., Edwards, C. (2024). « There’s no us vs. Them, it’s just us » : A creative approach to centring lived experience within the AVATAR2 trial. BMC Psychiatry, 24(1), 807. https://doi.org/10.1186/s12888-024-06268-z
Pyne, E., Joyce, R., Dwyer, C. P., Hynes, S. M. (2024). Evaluating public and patient involvement in interventional research-A newly developed checklist (EPPIIC). PloS One, 19(11), e0301314. https://doi.org/10.1371/journal.pone.0301314
Wallcook, S., Dohrn, I.-M., Dahlkvist, U., Domeij, Y., Green, K., Isaksson, G., Goliath, I. (2024). Outputs from a model of co-research with older care-experienced people in Sweden to advance eldercare services. Research Involvement and Engagement, 10(1), 121. https://doi.org/10.1186/s40900-024-00650-7
Loughhead, M., Hodges, E., McIntyre, H., Procter, N., Barbara, A., Bickley, B., Martinez, L., Albrecht, L., Huber, L. (2024). Pathways for Strengthening Lived Experience Leadership for Transformative Systems Change : Reflections on Research and Collective Change Strategies. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(5), e70048. https://doi.org/10.1111/hex.70048
McPherson, A., Paudyal, V., Lowrie, R., Heath, H., Moir, J., Allen, N., Barnes, N., Hill, H., Araf, A., Lombard, C., Ross, S., Tearne, S., Jagpal, P., Cheed, V., Akhtar, S., Provan, G., Williamson, A., Mair, F. S. (2024). Patient and Public Involvement in Research Evaluating Integrated Care for People Experiencing Homelessness : Findings From the PHOENIx Community Pharmacy Pilot Randomised-Controlled Trial. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(5), e70070. https://doi.org/10.1111/hex.70070
da Cruz Peniche, P., de Morais Faria, C. D. C., Hall, P., Fingleton, C., McPhillips, L., Gaetz, R., Roche, A., McCann, L., O’Beaglaoich, P., Murphy, D., Hickey, J., Lennon, O. (2024). A scoping review of patient and public involvement in empirical stroke research. International Journal of Stroke : Official Journal of the International Stroke Society, 17474930241262638. https://doi.org/10.1177/17474930241262638
Peters, S., Guccione, L., Francis, J., Best, S., Tavender, E., Curran, J., Davies, K., Rowe, S., Palmer, V. J., Klaic, M. (2024). Evaluation of research co-design in health : A systematic overview of reviews and development of a framework. Implementation Science : IS, 19(1), 63. https://doi.org/10.1186/s13012-024-01394-4
Schilling, I., Gerhardus, A. (2024). Is this really Empowerment ? Enhancing our understanding of empowerment in patient and public involvement within clinical research. BMC Medical Research Methodology, 24(1), 205.
https://doi.org/10.1186/s12874-024-02323-1
Vervoort, J. P. M., Konijn, W. S., Jansen, D. E. M. C., Boersma, C., de Zeeuw, J., Ho-Dac-Pannekeet, M. M., Gansevoort, R. T., Messchendorp, A. L., Sanders, J. S. F., de Wildt-Liesveld, R. (2024). Patient engagement as a collaborative process in a large Dutch COVID-19 vaccination study (RECOVAC)—Insight into the contribution of patient engagement and learnings for the future. Research Involvement and Engagement, 10(1), 96. https://doi.org/10.1186/s40900-024-00622-x
Man, C., Liu, T., Yan, S., Xie, Q., Liu, H. (2024). Research status and hotspots of patient engagement : A bibliometric analysis. Patient Education and Counseling, 125, 108306. https://doi.org/10.1016/j.pec.2024.108306
Martin, G., Carman, K. (2024). Resources to facilitate patient engagement in research. BMJ (Clinical Research Ed.), 386, q1806. https://doi.org/10.1136/bmj.q1806
Payne, S. A., Sumerfield, M., Hughes, S. (2024). Opportunities and Challenges in Patient and Public Involvement and Engagement in Palliative Care Research. Journal of Palliative Medicine. https://doi.org/10.1089/jpm.2024.0276
Rabi, S., Patton, M., Santana, M.-J., Tang, K. L. (2024). Patient engagement in the development and implementation of navigation services : A scoping review protocol. BMJ Open, 14(8), e082666. https://doi.org/10.1136/bmjopen-2023-082666
Carroll, P., Smith, É., Dervan, A., McCarthy, C., Woods, I., Beirne, C., Harte, G., O’Flynn, D., Quinlan, J., O’Brien, F. J., Flood, M., Moriarty, F. (2024). The Development of Principles for Patient and Public Involvement (PPI) in Preclinical Spinal Cord Research : A Modified Delphi Study. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(4), e14130. https://doi.org/10.1111/hex.14130
Robert, G., Donetto, S., Masterson, D., Kjellström, S. (2024). Applying models of co-production in the context of health and wellbeing. A narrative review to guide future practice. International Journal for Quality in Health Care : Journal of the International Society for Quality in Health Care, mzae077. https://doi.org/10.1093/intqhc/mzae077
Padden-Modi, M., Rush, H., Abdel-Aty, H., Matheson, D., Millman, R., Williams, P., Tombal, B., James, N. (2024). How Can Participant Experience of Quality-of-Life Research Be Improved in Cancer Research : Views of the Patient and Public Involvement Representatives from the STAMPEDE2 Prostate Cancer Trial. European Urology Oncology, S2588-9311(24)00185-8. https://doi.org/10.1016/j.euo.2024.07.012
Martin G., Carman K. (2024). Resources to facilitate patient engagement in research. BMJ 2024;386:q1806
Griffiths, S., Robertson, M., Kaviraj, C., Davies, F., McDevitt, M., Richards, A., Russell, M. (2024). Reflections on co-production : Developing a dementia research funding application with a diverse lived experience group. Dementia (London, England), 23(5), 709‑723.
Keij, S. M., Lie, H. C., Laidsaar-Powell, R., Kunneman, M., de Boer, J. E., Moaddine, S., Stiggelbout, A. M., & Pieterse, A. H. (2024). Corrigendum to « Patient-related characteristics considered to affect patient involvement in shared decision making about treatment : A scoping review of the qualitative literature » Patient Education and Counseling 111 (2023) 107677. Patient Education and Counseling, 124, 108257.
Marshall, D. A., Suryaprakash, N., Lavallee, D. C., McCarron, T. L., Zelinsky, S., Barker, K. L., MacKean, G., Santana, M. Dubois, H., Manser, T., Häbel, H., Härgestam, M., Creutzfeldt, J. (2024). Exploring differences in patient participation in simulated emergency cases in co-located and distributed rural emergency teams—An observational study with a randomized cross-over design. BMC Emergency Medicine, 24(1), 118.
J., Moayyedi, P., Bryan, S. (2024). Studying How Patient Engagement Influences Research : A Mixed Methods Study. The Patient, 17(4), 379‑395.
Mattingly, T. J. 2nd, Baquet, C. R., Lance, F., Medeiros, M., Mullins, C. D. (2024). Community-Academic Partnerships for Health Research : An Iterative and Transparent Process of Patient Engagement Before the Research Begins. Ethnicity & Disease, 34(2), 53‑59.
Sides, T. L., Jensen, A. C., Argust, M. M., Amundson, E. C., Thomas, G. R., Keller, R., Mahaffey, M., Krebs, E. E. (2024). Experiences and lessons learned from a patient-engagement service established by a national research consortium in the U.S. Veterans Health Administration. Learning Health Systems, 8(3), e10421.
Foster, A., Caunt, S., Schofield, H., Glerum-Brooks, K., Begum, S., Gleeson, P., Prestwich, G., Baird, W. (2024). Evaluating a grant development public involvement funding scheme : A qualitative document analysis. Research Involvement and Engagement, 10(1), 57. https://doi.org/10.1186/s40900-024-00588-w
Eberl, M., Cruickshank, S. M. (2024). A culture shift to support public involvement and engagement in research. The Journal of Experimental Medicine, 221(6). https://doi.org/10.1084/jem.20240268
Palm, M. E., Evans, D., Staniszewska, S., Brady, L.-M., Hanley, B., Sainsbury, K., Stewart, D., Wray, P. (2024). Public involvement in UK health and care research 1995-2020 : Reflections from a witness seminar. Research Involvement and Engagement, 10(1), 65. https://doi.org/10.1186/s40900-024-00598-8
Rodriguez, A., Shambhunath, S., Wijesiri, T. I. D., Biazus-Dalcin, C., Mc Goldrick, N. (2024). Co-design of health educational materials with people experiencing homelessness and support workers : A scoping review. Frontiers in Oral Health, 5, 1355349. https://doi.org/10.3389/froh.
Visser, M., ’t Hart, N., de Mul, M., Weggelaar-Jansen, A. M. (2024). The Perspectives of Healthcare Professionals and Managers on Patient Involvement in Care Pathway Development : A Discourse Analysis. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(3), e14101. https://doi.org/10.1111/hex.
Alrayshouni, Z., Dayekh, A., El-Tassi, A., Pakai, A. (2024). Rationalizing the Influence of Co-Design on Distress, Clinical Decision-Making and Disease Self-Management of Cancer Patients-as-Partners : A Quasi-Experimental Study. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(3), e14113. https://doi.org/10.1111/hex.14113
Beresford, C. J., Rahman, M., Gray, Y., Ramshaw, S., Gelling, L., Baron, S., Dominey, J. (2024). Embedding Public Involvement in a PhD Research Project With People Affected by Advanced Liver Disease. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(3), e14097. https://doi.org/10.1111/hex.14097
de Alcântara Mendes, J. A., Lucassen, M., Adams, A., Martin, L., Aicardi, C., Woodcock, R., Nielsen, E., Townsend, E., Jirotka, M. (2024). Patient and Public Involvement (PPI) and Responsible Research and Innovation (RRI) approaches in mental health projects involving young people : A scoping review protocol. Research Involvement and Engagement, 10(1), 60. https://doi.org/10.1186/s40900-024-00591-1
Lammons, W., Nobility, L., Markham, S., Saloniki, E.-C. (2024). PPIE in a technical research study : Using public involvement to refine the concept and understanding and move towards a multidimensional concept of disability. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(3), e14072. https://doi.org/10.1111/hex.14072
Peniche, P., de Morais Faria, C. D. C., Hall, P., Fingleton, C., McPhillips, L., Gaetz, R., Roche, A., McCann, L., O’Beaglaoich, P., Murphy, D., Hickey, J., Lennon, O. (2024). A Scoping Review of Patient and Public Involvement (PPI) in Empirical Stroke Research. International Journal of Stroke : Official Journal of the International Stroke Society,17474930241262638.
https://doi.org/10.1177/17474930241262638
Brown, P., Singh, H., Su, E., Sirisegaram, L., Munce, S. E. P., Eaton, A. D., Zhabokritsky, A., McKinlay, S., Kokorelias, K. M. (2024). Understanding the use of co-design methods for research involving older adults living with HIV: A scoping review protocol. PloS One, 19(5), e0303580. https://doi.org/10.1371/journal.pone.0303580
Benz, C., Scott-Jeffs, W., McKercher, K. A., Welsh, M., Norman, R., Hendrie, D., Locantro, M., Robinson, S. (2024). Community-based participatory-research through co-design : Supporting collaboration from all sides of disability. Research Involvement and Engagement, 10(1), 47. https://doi.org/10.1186/s40900-024-00573-3
Moult, A., Aries, A., Bailey, P., Paskins, Z. (2024). Reflecting on activities which support public involvement within an evaluation of public involvement reports from facilities funded by the national institute for health and care research : A co-produced commentary. Research Involvement and Engagement, 10(1), 46. https://doi.org/10.1186/s40900-024-00579-x
Doughty, J., Preston, J., Paisi, M., Hudson, A., Burns, F., Porter, S. R., Watt, R. G. (2024). Embedding patient and public involvement into a doctoral study : Developing a point-of-care HIV testing intervention for dental settings. Frontiers in Oral Health, 5, 1359132.
https://doi.org/10.3389/froh.2024.1359132
Eberl, M., Cruickshank, S. M. (2024). A culture shift to support public involvement and engagement in research. The Journal of Experimental Medicine, 221(6). https://doi.org/10.1084/jem.20240268
Haroutounian, S., Holzer, K. J., Kerns, R. D., Veasley, C., Dworkin, R. H., Turk, D. C., Carman, K. L., Chambers, C. T., Cowan, P., Edwards, R. R., Eisenach, J. C., Farrar, J. T., Ferguson, M., Forsythe, L. P., Freeman, R., Gewandter, J. S., Gilron, I., Goertz, C., Grol-Prokopczyk, H., … Vollert, J. (2024). Patient engagement in designing, conducting, and disseminating clinical pain research : IMMPACT recommended considerations. Pain, 165(5), 1013‑1028.
https://doi.org/10.1097/j.pain.0000000000003121
Phillips, O. R., Harries, C., Leonardi-Bee, J., Knight, H., Sherar, L. B., Varela-Mato, V., Morling, J. R. (2024). What are the strengths and limitations to utilising creative methods in public and patient involvement in health and social care research ? A qualitative systematic review. Research Involvement and Engagement, 10(1), 48. https://doi.org/10.1186/s40900-024-00580-4
wska, M., Kelly, C., Gunn, B., Meiksin, R., Scott, R. H., Palmer, M. J., Wellings, K., Lohr, P. A., French, R. S., N/A, T. S. S. T. (2024). Patient and public involvement in abortion research : Reflections from the Shaping Abortion for Change (SACHA) Study. BMJ Sexual & Reproductive Health, 50(2), 142‑145. https://doi.org/10.1136/bmjsrh-2023-202018
Carroll, P., Dervan, A., McCarthy, C., Woods, I., Beirne, C., Harte, G., O’Flynn, D., O’Connor, C., McGuire, T., Leahy, L. M., Gonzalez, J. G., Stasiewicz, M., Maughan, J., Quinlan, J., Smith, É., Moriarty, F., O’Brien, F. J., Flood, M. (2024). The role of Patient and public involvement (PPI) in pre-clinical spinal cord research : An interview study. PloS One, 19(4), e0301626. https://doi.org/10.1371/journal.pone.0301626
Elsolh, K., Li, A., Hu, M., Seleq, S., Neary, E., Gimpaya, N., Scaffidi, M. A., Kishibe, T., Khan, R., Grover, S. C. (2024). Patient and Public Involvement in Inflammatory Bowel Disease Research-A Scoping Review. Journal of the Canadian Association of Gastroenterology, 7(2), 137‑148. https://doi.org/10.1093/jcag/gwad054
Erwin, J., Burns, L., Devalia, U., Witton, R., Shawe, J., Wheat, H., Axford, N., Doughty, J., Kaddour, S., Nelder, A., Brocklehurst, P., Boswell, S., Paisi, M. (2024). Co-production of health and social science research with vulnerable children and young people : A rapid review. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(2), e13991. https://doi.org/10.1111/hex.13991
Hammoud, S., Alsabek, L., Rogers, L., McAuliffe, E. (2024). Systematic review on the frequency and quality of reporting patient and public involvement in patient safety research. BMC Health Services Research, 24(1), 532. https://doi.org/10.1186/s12913-024-11021-z
Hilton, A., Megson, M., Aryankhesal, A., Blake, J., Rook, G., Irvine, A., Um, J., Killett, A., Maidment, I., Loke, Y., van Horik, J., Fox, C. (2024). What really is nontokenistic fully inclusive patient and public involvement/engagement in research? Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(2), e14012. https://doi.org/10.1111/hex.14012
Hough, K., Grasmeder, M., Parsons, H., Jones, W. B., Smith, S., Satchwell, C., Hobday, I., Taylor, S., Newman, T. (2024). Patient and public involvement and engagement (PPIE) : How valuable and how hard ? An evaluation of ALL_EARS@UoS PPIE group, 18 months on. Research Involvement and Engagement, 10(1), 38. https://doi.org/10.1186/s40900-024-00567-1
Janssens, N., Van Wilder, L., Van Hecke, A., Van Hoorenbeeck, K., Vanden Wyngaert, K., De Smedt, D., Goossens, E. (2024). COCCOS study : Developing a transition program for adolescents with chronic conditions using Experience-Based Co-Design. A study protocol. PloS One, 19(4), e0298571. https://doi.org/10.1371/journal.pone.0298571
Karlsson, A. W., Kragh-Sørensen, A., Børgesen, K., Behrens, K. E., Andersen, T., Maglekær, K. M., Rothmann, M. J., Ketelaar, M., Petersen, E. N., Janssens, A. (2024). Wider institutional research cultures and their influence on patient and public involvement and engagement in health research—An institutional ethnography. Social Science & Medicine (1982), 347, 116773. https://doi.org/10.1016/j.socscimed.2024.116773
Marshall, D. A., Suryaprakash, N., Bryan, S., Barker, K. L., MacKean, G., Zelinsky, S., McCarron, T. L., Santana, M. J., Moayyedi, P., Lavallee, D. C. (2024). Measuring the Impact of Patient Engagement in Health Research : An Exploratory Study Using Multiple Survey Tools. Journal of the Canadian Association of Gastroenterology, 7(2),177‑187.
https://doi.org/10.1093/jcag/gwad045
Piil, K., Johannessen, K. B., Pappot, H. (2024). Strategies for meaningful patient and public involvement in neuro-oncological research. Neuro-Oncology Practice, 11(2), 109‑110. https://doi.org/10.1093/nop/npad080
Prasun, M. A., Hubbell, A., Rathman, L., & Stamp, K. D. (2024). The Heart Failure Patient Foundation Position Statement on Research and Patient Involvement. Heart & Lung : The Journal of Critical Care, S0147-9563(24)00057-8. https://doi.org/10.1016/j.hrtlng.2024.04.005
Shakhnenko, I., Husson, O., Chuter, D., van der Graaf, W. (2024). Elements of successful patient involvement in clinical cancer trials : A review of the literature. ESMO Open, 9(4), 102947.
https://doi.org/10.1016/j.esmoop.2024.102947
Sutton, L., Labriola, M., Bognanno, T., Moneer, S., Ghith, J., Rodriguez, G., Moore, L., Evuarherhe, O., Morgans, A. K. (2024). Patient engagement in designing and publishing research in prostate cancer : A scoping review. Future Oncology (London, England).
https://doi.org/10.2217/fon-2023-0543
Zhou, Q., He, H., Li, Q., Zhao, J., Wang, L., Luo, Z., Wang, X., Chen, Y. (2024). Patient and public involvement (PPI) in systematic reviews : Frequency, determinants, stages, barriers, and dissemination. Journal of Clinical Epidemiology, 111356.
https://doi.org/10.1016/j.jclinepi.2024.111356
O’Reilly S, Whiston A, Corbett E, O’Mahony A., Manning M., Boland P., Robinson K., Galvin R., Allardyce J., Butler M., Bradley J., Salsberg J., O’Connor M., Pond P., Murphy E., Glynn L., Cunningham N., Hennessy E., Hays S. (2024). Development and evaluation of a stroke research Public Patient Involvement Panel [version 1; peer review: awaiting peer review]. HRB Open Res 7:22 https://doi.org/10.12688/hrbopenres.13838.1
Waltz, M., Flatt, M. A., Juengst, E. T., Conley, J. M., Cadigan, R. J. (2024). Public participation in human genome editing research governance : What do scientists think? Journal of Community Genetics. https://doi.org/10.1007/s12687-024-00701-2
Hu, W. (2024). Imagining the model citizen : A comparison between public understanding of science, public engagement in science, and citizen science. Public Understanding of Science (Bristol, England), 9636625241227081. https://doi.org/10.1177/09636625241227081
Scholz, B., Stewart, S., Pamoso, A., Gordon, S., Happell, B., Utomo, B. (2024). The importance of going beyond consumer or patient involvement to lived experience leadership. International Journal of Mental Health Nursing, 33(1), 1‑4. https://doi.org/10.1111/inm.13282
Areia, M., Dias, L. P., Matos, P., Figueiredo, D., Neves, A. L., da Costa, E. D., Loureiro, C. C., Boechat, J. L., Reis, A. B., Simões, P., Taborda-Barata, L., Fonseca, J. A., Sá-Sousa, A., Jácome, C. (2024). Public involvement in chronic respiratory diseases research : A qualitative study of patients’, carers’ and citizens’ perspectives. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(1), e13917. https://doi.org/10.1111/hex.13917
Blaylock, R., Lewandowska, M., Kelly, C., Gunn, B., Meiksin, R., Scott, R. H., Palmer, M. J., Wellings, K., Lohr, P. A., French, R. S., N/A, T. S. S. T. (2024). Patient and public involvement in abortion research : Reflections from the Shaping Abortion for Change (SACHA) Study. BMJ Sexual & Reproductive Health, bmjsrh-2023-202018. https://doi.org/10.1136/bmjsrh-2023-202018
Chudyk, A. M., Stoddard, R., Duhamel, T. A., Schultz, A. S. H. (2024). Future directions for patient engagement in research : A participatory workshop with Canadian patient partners and academic researchers. Health Research Policy and Systems, 22(1), 24. https://doi.org/10.1186/s12961-024-01106-w
Dawes, P., Arru, P., Corry, R., McDermott, J. H., Garlick, J., Guest, H., Howlett, E., Jackson, I., James, R., Keane, A., Murray, C., Newman, W., Visram, A., Munro, K. J. (2024). Patient and public involvement in hearing research : Opportunities, impact and reflections with case studies from the Manchester Centre for Audiology and Deafness. International Journal of Audiology, 63(2), 146‑154. https://doi.org/10.1080/14992027.2022.2155881
Di Lorito, C., Griffiths, S., Poole, M., Kaviraj, C., Robertson, M., Cutler, N., Wilcock, J. (2024). Patient and public involvement and engagement with underserved communities in dementia research : Reporting on a partnership to co-design a website for postdiagnostic dementia support. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(1), e13992. https://doi.org/10.1111/hex.13992
Kehoe, M., Whitehead, R., de Boer, K., Meyer, D., Hopkins, L., Nedeljkovic, M. (2024). A qualitative evaluation of a co-design process involving young people at risk of suicide. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(1), e13986. https://doi.org/10.1111/hex.13986
Mitchell, S., Turner, N., Fryer, K., Beng, J., Ogden, M. E., Watson, M., Gardiner, C., Bayly, J., Sleeman, K. E., Evans, C. J. (2024). A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research. Research Involvement and Engagement, 10(1), 19. https://doi.org/10.1186/s40900-023-00525-3
Totzeck, C., van der Meer, A. S., Christiansen, H., Durlach, F., Li Sanchez, K., Schneider, S. (2024). Systematic Review : Patient and Public Involvement of Children and Young People in Mental Health Research. Clinical Child and Family Psychology Review.
https://doi.org/10.1007/s10567-024-00470-x
Zirnsak, T.-M., Ng, A. H., Brasier, C., Gray, R. (2024). Public involvement in Australian clinical trials : A systematic review. Clinical Trials (London, England), 17407745231224533. https://doi.org/10.1177/17407745231224533
Zogas, A., Sitter, K. E., Barker, A. M., Fix, G. M., Khanna, A., Herbst, A. N., Vimalananda, V. G. (2024). Strategies for engaging patients in co-design of an intervention. Patient Education and Counseling, 123, 108191. https://doi.org/10.1016/j.pec.2024.108191
Mitchell, S., Turner, N., Fryer, K., Beng J. , Ogden M. E. , Watson M. ,Gardiner C. , Bayly J. , Sleeman K. E. Catherine, Evans C. J. (2024). A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research . Res Involv Engagem 10, 19. https://doi.org/10.1186/s40900-023-00525-3
Ede, J., Clarete, M., Taylor, I., Taylor, C., Kent, B., Watkinson, P., Endacott, R. (2024). Patient and public involvement and engagement (PPIE) in research : The Golden Thread. Nursing in Critical Care, 29(1), 10‑13. https://doi.org/10.1111/nicc.12921
Feldmann, L. K., Roudini, J., Kühn, A. A., Habets, J. G. V. (2023). Improving naturalistic neuroscience with patient engagement strategies. Frontiers in Human Neuroscience, 17, 1325154.
https://doi.org/10.3389/fnhum.2023.1325154
Furlong, P., Dugar, A., White, M. (2024). Patient engagement in clinical trial design for rare neuromuscular disorders : Impact on the DELIVER and ACHIEVE clinical trials. Research Involvement and Engagement, 10(1), 1. https://doi.org/10.1186/s40900-023-00535-1
Roquette, C., Crisóstomo, S., Milagre, T., Ribeiro, R. S., Pedro, A. R., Valente, A. (2024). Patient organisations’ views, motivations and experiences on patient involvement in cancer research : A pilot study in Portugal. BMJ Open, 14(1), e077444. https://doi.org/10.1136/bmjopen-2023-077444
Ryf, C., Hofstetter, L., Clack, L., Hincapié, C. A. (2024). Involving patients and clinicians in the development of a randomised clinical trial protocol to assess spinal manual therapy versus nerve root injection for patients with lumbar radiculopathy : A patient and public involvement project to inform the SALuBRITY trial design. Research Involvement and Engagement, 10(1), 8.
https://doi.org/10.1186/s40900-023-00536-0
Scholz, B., Kirk, L., Warner, T., O’Brien, L., Kecskes, Z., Mitchell, I. (2024). From a Single Voice to Diversity : Reframing « Representation » in Patient Engagement. Qualitative Health Research, 104973232
31221674. https://doi.org/10.1177/10497323231221674
Woolf, B., Vinson, A. H. (2024). Cultural health capital and patient partner recruitment into healthcare improvement work. Social Science & Medicine (1982), 341, 116500.
https://doi.org/10.1016/j.socscimed.2023.116500
Pomey, M., Pelaez, S., Le Roux, E., Demers‐Payette, O., Sirois, M., Lochhead, L., Ganache, I., Normandin, L., L’Espérance, A., De Guise, M. (2024). How to mobilise users’ experiential knowledge in the evaluation of advanced technologies and practices in Quebec? The example of the permanent users’ and relatives’ panel. Health Expectations, 27(1), e13964. https://doi.org/10.1111/hex.13964
Blackburn, S., Clinch, M., de Wit, M., Moser, A., Primdahl, J., van Vliet, E., Walker, C., Stevenson, F. (2023). Series : Public engagement with research. Part 1 : The fundamentals of public engagement with research. The European Journal of General Practice, 29(1), 2232111. https://doi.org/10.1080/13814788.2023.2232111
Swaithes, L., Campbell, L., Anthierens, S., Skrybant, M., Schiphof, D., French, H., de Wit, M., Blackburn, S., Dziedzic, K. (2023). Series : Public engagement with research. Part 4 : Maximising the benefits of involving the public in research implementation. The European Journal of General Practice, 29(1), 2243037. https://doi.org/10.1080/13814788.2023.2243037
Zaratin, P., Khan, U., Graffigna, G. (2023). Comment on « Reflections on patient engagement by patient partners : How it can go wrong ». Research Involvement and Engagement, 9(1), 122. https://doi.org/10.1186/s40900-023-00534-2
Christiansen, M. G., Pappot, H., Hamilton, C., Lund-Jacobsen, T., Kristensen, A. W., Nordentoft, S., Høeg, B. L., Bidstrup, P., Nielsen, I. H., Ulstrup, J., Trip, A. K., Jarden, M., Piil, K. (2023). Patient Engagement in Research Scale (PEIRS-22) : Danish translation, applicability, and user experiences. Research Involvement and Engagement, 9(1), 115. https://doi.org/10.1186/s40900-023-00526-2
Harman, N. L., McGiveron, K., Tudur Smith, C., Williamson, P. R., Barrington, H. (2023). Opening up ideas : An advent calendar for patient and public engagement in clinical trials research. Research Involvement and Engagement, 9(1), 118. https://doi.org/10.1186/s40900-023-00530-6
Nohová, I., Andrews, J., Votan, B., Miller, A., Sehouli, J., Berger, R. (2023). Patient involvement in research within the Gynecological Cancer InterGroup : A call to action for a systematic approach : Results from a survey. Health Science Reports, 6(12), e1735. https://doi.org/10.1002/hsr2.1735
Røssvoll, T. B., Rosenvinge, J. H., Liabo, K., Hanssen, T. A., Pettersen, G. (2023). Patient and public involvement in health research from researchers’ perspective. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 26(6), 2525‑2531. https://doi.org/10.1111/hex.13853
Vanderhout, S., Richards, D. P., Butcher, N., Courtney, K., Nicholls, S. G., Fergusson, D. A., Potter, B. K., Bhalla, M., Nevins, P., Fox, G., Ly, V., Taljaard, M., Macarthur, C. (2023). Prevalence of patient partner authorship and acknowledgment in child health research publications : An umbrella review. Journal of Clinical Epidemiology, 164, 35‑44. https://doi.org/10.1016/j.jclinepi.2023.10.012
Areia M., Dias L. P., Matos P., Figueiredo D., Neves A. L., da Costa E. D.; Loureiro, Boechat J. L., Reis A. B., Simões P., Taborda-Barata L., Fonseca J. A., Sousa A. S. ; Jácome C. (2023). Public involvement in chronic respiratory diseases research: A qualitative study of patients’, carers’ and citizens’ perspectives. Health Expectations. 2023;27:e13917. https://doi.org/10.1111/hex.13917
Ali, A. Z., Wright, B., Curran, J. A., Newton, A. S. (2023). Review : Patient engagement in child, adolescent, and youth mental health care research—A scoping review. Child and Adolescent Mental Health, 28(4), 524‑535. https://doi.org/10.1111/camh.12615
Honap, S., Buisson, A., Danese, S., Beaugerie, L., Peyrin-Biroulet, L. (2023). Patient and Public Involvement in Research : Lessons for Inflammatory Bowel Disease. Journal of Crohn’s & Colitis, 17(11), 1882‑1891. https://doi.org/10.1093/ecco-jcc/jjad090
Huml, R. A., Collyar, D., Antonijevic, Z., Beckman, R. A., Quek, R. G. W., Ye, J. (2023). Aiding the Adoption of Master Protocols by Optimizing Patient Engagement. Therapeutic Innovation & Regulatory Science, 57(6), 1136‑1147. https://doi.org/10.1007/s43441-023-00570-w
Kroll, T., Escorpizo, R. (2023). Editorial : Patient and public involvement in disability and rehabilitation research. Frontiers in Rehabilitation Sciences, 4, 1307386. https://doi.org/10.3389/fresc.2023.1307386
Moult, A., Baker, D., Aries, A., Bailey, P., Blackburn, S., Kingstone, T., Lwembe, S., Paskins, Z. (2023). Using the UK standards for public involvement to evaluate the public involvement sections of annual reports from NIHR managed research centres. Research Involvement and Engagement, 9(1), 109. https://doi.org/10.1186/s40900-023-00517-3
Pellegrini, M., Chakravorty, S., Del Mar Manu Pereira, M., Gulbis, B., Gilmour-Hamilton, C., Hayes, S., de Montalembert, M., Inusa, B. P. D., Colombatti, R., Roy, N. B. (2023). Sickle cell disease : Embedding patient participation into an international conference can transform the role of lived experience. Orphanet Journal of Rare Diseases, 18(1), 341. https://doi.org/10.1186/s13023-023-02951-8
Worboys, H. M., Broomfield, J., Smith, A., Stannard, R., Tyrer, F., Vounzoulaki, E., Czyznikowska, B., Grewal-Santini, G., Greenwood, J., Gray, L. J. (2023). Incorporation of patient and public involvement in s
Bisson, M., Aubrey-Bassler, K., Chouinard, M.-C., Doucet, S., Ramsden, V. R., Dumont-Samson, O., Howse, D., Lambert, M., Schwarz, C., Luke, A., Rabbitskin, N., Gaudreau, A., Porter, J., Rubenstein, D., Taylor, J., Warren, M., Hudon, C. (2023). Patient engagement in health implementation research : A logic model. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 26(5), 1854‑1862. https://doi.org/10.1111/hex.13782
Taccone, M. S., Baudais, N., Wood, D., Bays, S., Frost, S., Urquhart, R., Graham, I. D., Takacs, J. (2023). Co-creation of a patient engagement strategy in cancer research funding. Research Involvement and Engagement, 9(1), 86. https://doi.org/10.1186/s40900-023-00501-x
Vanderhout, S., Nevins, P., Nicholls, S. G., Macarthur, C., Brehaut, J. C., Potter, B. K., Gillies, K., Goulao, B., Smith, M., Hilderley, A., Carroll, K., Spinewine, A., Weijer, C., Fergusson, D. A., Taljaard, M. (2023). Patient and public involvement in pragmatic trials : Online survey of corresponding authors of published trials. CMAJ Open, 11(5), E826‑E837. https://doi.org/10.9778/cmajo.20220198
Auwal, F. I., Copeland, C., Clark, E. J., Naraynassamy, C., McClelland, G. R. (2023). A systematic review of models of patient engagement in the development and life cycle management of medicines. Drug Discovery Today, 28(9), 103702. https://doi.org/10.1016/j.drudis.2023.103702
Burgers, V. W. G., Dickhout, A., Harthoorn, N. C. G. L., Frissen, S. A. M. M., Noordhoek, M. J., Fransen, S. A., Reuvers, M. J. P., van der Graaf, W. T. A., Husson, O. (2023). What makes patient involvement work ? Lessons learned from a qualitative study in adolescents and young adults with cancer. Patient Education and Counseling, 115, 107881.
https://doi.org/10.1016/j.pec.2023.107881
Abell, L., Maher, F., Begum, S., Booth, S., Broomfield, J., Lee, S., Smith, E., Stannard, R., Teece, L., Vounzoulaki, E., Worboys, H., & Gray, L. J. (2023). Incorporation of patient and public involvement in statistical methodology research : A survey assessing current practices and attitudes of researchers. Research Involvement and Engagement, 9(1), 100.
https://doi.org/10.1186/s40900-023-00507-5
Bacchini, F. (2023). Family reflections : Prematurity and the power of parent involvement in research. Pediatric Research, 94(4), 1579‑1580.
https://doi.org/10.1038/s41390-023-02727-7
Bisson, M., Aubrey-Bassler, K., Chouinard, M.-C., Doucet, S., Ramsden, V. R., Dumont-Samson, O., Howse, D., Lambert, M., Schwarz, C., Luke, A., Rabbitskin, N., Gaudreau, A., Porter, J., Rubenstein, D., Taylor, J., Warren, M., & Hudon, C. (2023). Patient engagement in health implementation research : A logic model. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 26(5), 1854‑1862. https://doi.org/10.1111/hex.13782
Blackburn, S., Hine, R., Fairbanks, S., Parkes, P., Murinas, D., Meakin, A., Taylor, R., Parton, L., Jones, M., Tunmore, J., Lench, J., Evans, N., Lewney, K., O’Mara, L., Fryer, A. A. (2023). The INSIGHT project : Reflections on the co-production of a quality recognition programme to showcase excellence in public involvement in health and care research. Research Involvement and Engagement, 9(1), 99. https://doi.org/10.1186/s40900-023-00508-4
Hatch, S., Fitzgibbon, J., Tonks, A. J., Forty, L. (2023). Diversity in patient and public involvement in healthcare research and education-Realising the potential. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy.
https://doi.org/10.1111/hex.13896
Lloyd, N., Hyett, N., Kenny, A. (2023). Barriers and Enablers to Evaluating Outcomes From Public Involvement in Health Service Design : An Interpretive Description. Qualitative Health Research, 33(11), 983‑994.
https://doi.org/10.1177/10497323231191048
Taccone, M. S., Baudais, N., Wood, D., Bays, S., Frost, S., Urquhart, R., Graham, I. D., Takacs, J. (2023). Co-creation of a patient engagement strategy in cancer research funding. Research Involvement and Engagement, 9(1), 86. https://doi.org/10.1186/s40900-023-00501-x
Ginsburg O., Vanderpuye V., Beddoe A.-M., Bhoo-Pathy N., Bray F., Caduff C., Florez N., Fadhil I., Hammad N., Heidari S., Kataria I., Kumar S., Liebermann E., Moodley J., Mutebi M., Mukherji D., Nugent R., K W So W., Soto-Perez-de-Celis E.,* Unger-Saldana K., Allman G., Bhimani J., Ourlon M. T. B, Eala A.B. M., Hovmand P. S., Kong Y.C., Menon S., Taylor C. D., So I. (2023) Femmes, pouvoir et cancer : une commission. The Lancet. Vol 402
Lamouroux-Delay, A., Casanova, C., Redmond, N. M., Clastres, N., Rotily, M., Dordonne, M., Journet, P., Laffont, C., Laffont, E., Linon, C., Netens, B., Witkowski, V., Durand, M.-A. (2023). [Acceptability of interventional materials : Public participation in public health interventional research]. Sante publique (Vandoeuvre-les-Nancy, France), 35(2), 159‑170. https://doi.org/10.
Tripp, L., Richards, D. P., Daly-Cyr, J., Lane, T., Linkiewich, D., Begley, K. N., Buckley, N., Hudspith, M., Poulin, P., Abelson, J. (2023). Evaluating the impacts of patient engagement on a national health research network : Results of a case study of the Chronic Pain Network. Research Involvement and Engagement, 9(1), 73. https://doi.org/10.1186/s40900-023-00491-w
Agyei-Manu, E., Atkins, N., Lee, B., Rostron, J., Dozier, M., Smith, M., McQuillan, R. (2023). The benefits, challenges, and best practice for patient and public involvement in evidence synthesis : A systematic review and thematic synthesis. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 26(4), 1436‑1452. https://doi.org/10.1111/hex.13787
Aiyegbusi, O. L., McMullan, C., Hughes, S. E., Turner, G. M., Subramanian, A., Hotham, R., Davies, E. H., Frost, C., Alder, Y., Agyen, L., Buckland, L., Camaradou, J., Chong, A., Jeyes, F., Kumar, S., Matthews, K. L., Moore, P., Ormerod, J., Price, G., … Calvert, M. J. (2023). Considerations for patient and public involvement and engagement in health research. Nature Medicine, 29(8), 1922‑1929. https://doi.org/10.1038/s41591-023-02445-x
Dalko K, Kraft B, Jahn P, Schildmann J, Hofstetter S. (2023). Cocreation of Assistive Technologies for Patients With Long COVID: Qualitative Analysis of a Literature Review on the Challenges of Patient Involvement in Health and Nursing Sciences. J Med Internet Res 2023;25:e46297. doi: 10.2196/46297
Snowdon, C., Silver, E., Charlton, P., Devlin, B., Greenwood, E., Hutchings, A., Moug, S., Vohra, R., Grieve, R. (2023). Adapting Patient and Public Involvement processes in response to the Covid-19 pandemic. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 26(4), 1658‑1667. https://doi.org/10.1111/hex.13771
Lloyd, N., Hyett, N., & Kenny, A. (2023). Barriers and Enablers to Evaluating Outcomes From Public Involvement in Health Service Design : An Interpretive Description. Qualitative Health Research, 10497323231191048. https://doi.org/10.1177/10497323231191048
Mercuri, M., Gafni, A. (2023). Improving patient engagement in research is not enough to answer the question of what is important for an individual patient in the clinical encounter : A commentary on Turcotte et al. (2023) call for a change in the approach to « patient-oriented » research. Journal of Evaluation in Clinical Practice, 29(5), 741‑743. https://doi.org/10.1111/jep.13838
Dalko, K., Kraft, B., Jahn, P., Schildmann, J., Hofstetter, S. (2023). Cocreation of Assistive Technologies for Patients With Long COVID: Qualitative Analysis of a Literature Review on the Challenges of Patient Involvement in Health and Nursing Sciences. Journal of Medical Internet Research, 25, e46297. https://doi.org/10.2196/46297
Dengsø, K. E., Lindholm, S. T., Herling, S. F., Pedersen, M., Nørskov, K. H., Collet, M. O., Nielsen, I. H., Christiansen, M. G., Engedal, M. S., Moen, H. W., Piil, K., Egerod, I., Hørder, M., Jarden, M. (2023). Patient and public involvement in Nordic healthcare research : A scoping review of contemporary practice. Research Involvement and Engagement, 9(1), 72. https://doi.org/10.1186/s40900-023-00490-x
Dews, S.-A., Bassi, A., Buckland, S., Clements, L., Daley, R., Davies, A., Evett, S., Howland, S., Kinloch, E., Phillips, B., Powell, G., Preston, J., Sterniczuk, K., Bohm, N. (2023). Characterising meaningful patient and public involvement in the pharmaceutical industry research setting : A retrospective quality assessment. BMJ Open, 13(8), e071339. https://doi.org/10.1136/bmjopen-2022-071339
Etchegary, H., Linklater, S., Duquette, D. ’Arcy, Wilkinson, G., Francis, V., Gionet, E., Patey, A. M., Grimshaw, J. M. (2023). « I think there has to be a mutual respect for there to be value » : Evaluating patient engagement in a national clinical trial on de-implementation of low value care. Research Involvement and Engagement, 9(1), 70. https://doi.org/10.1186/s40900-023-00483-w
Hughes, N. F., Fern, L. A., Polanco, A., Carrigan, C., Feltbower, R. G., Gamble, A., Connearn, E., Lopez, A., Bisci, E., Pritchard-Jones, K. (2023). Patient and public involvement to inform priorities and practice for research using existing healthcare data for children’s and young people’s cancers. Research Involvement and Engagement, 9(1), 71. https://doi.org/10.1186/s40900-023-00485-8
Huml, R. A., Collyar, D., Antonijevic, Z., Beckman, R. A., Quek, R. G. W., Ye, J. (2023). Aiding the Adoption of Master Protocols by Optimizing Patient Engagement. Therapeutic Innovation & Regulatory Science. https://doi.org/10.1007/s43441-023-00570-w
Husson, M., Dechartres, A., Ramdjee, B., Diverres, M., Zejli, T., L’Hénaff, M., Jehanno, E., Tubach, F., Caille, A. (2023). Patient and public involvement is suboptimal in randomized controlled trials addressing a chronic condition. Journal of Clinical Epidemiology, 160, 71‑82. https://doi.org/10.1016/j.jclinepi.2023.06.012
Lloyd, N., Hyett, N., Kenny, A. (2023). Barriers and Enablers to Evaluating Outcomes From Public Involvement in Health Service Design : An Interpretive Description. Qualitative Health Research, 10497323231191048. https://doi.org/10.1177/10497323231191048
Mosconi, P., Colombo, C., Paletta, P., Gangeri, L., Pellegrini, C., Garralda, E., Miceli, R., Brunelli, C. (2023). Public and patient involvement : A survey on knowledge, experience and opinions among researchers within a precision oncology European project. BMC Cancer, 23(1), 814.
https://doi.org/10.1186/s12885-023-11262-x
Muir, R., Carlini, J., Crilly, J., Ranse, J. (2023). Patient and public involvement in emergency care research : A scoping review of the literature. Emergency Medicine Journal : EMJ, 40(8), 596‑605.
https://doi.org/10.1136/emermed-2022-212514
Røssvoll, T. B., Rosenvinge, J. H., Liabo, K., Hanssen, T. A., Pettersen, G. (2023). Patient and public involvement in health research from researchers’ perspective. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy.
https://doi.org/10.1111/hex.13853
Tripp, L., Richards, D. P., Daly-Cyr, J., Lane, T., Linkiewich, D., Begley, K. N., Buckley, N., Hudspith, M., Poulin, P., Abelson, J. (2023). Evaluating the impacts of patient engagement on a national health research network : Results of a case study of the Chronic Pain Network. Research Involvement and Engagement, 9(1), 73.
https://doi.org/10.1186/s40900-023-00491-w
Lloyd N., Hyett N., Kenny A. (2023). Barriers and Enablers to Evaluating Outcomes From Public Involvement in Health Service Design: An Interpretive Description. Qualitative Health Research. Vol. 0(0), pp. 1–12 :https://doi.org/10.1177/10497323231191048
Staniszewska, S., Jakab, I., Low, E., Mossman, J., Posner, P., Husereau, D., Stephens, R., Drummond, M. (2023). Commentary : Advocating for patient and public involvement and engagement in health economic evaluation. Research Involvement and Engagement, 9(1), 45. https://doi.org/10.1186/s40900-023-00444-3
Harvard, S., Winsberg, E. (2023). Patient and Public Involvement in Health Economics Modelling Raises the Need for Normative Guidance. PharmacoEconomics, 41(7), 733‑740.
https://doi.org/10.1007/s40273-023-01274-7
Aas, S. N., Distefano, M. B., Pettersen, I., Gravrok, B., Nordvoll, L. Y., Bjaastad, J. F., Grimsgaard, S. (2023). Patient and public involvement in health research in Norway : A survey among researchers and patient organisations. Research Involvement and Engagement, 9(1), 48.
https://doi.org/10.1186/s40900-023-00458-x
Aiyegbusi, O. L., McMullan, C., Hughes, S. E., Turner, G. M., Subramanian, A., Hotham, R., Davies, E. H., Frost, C., Alder, Y., Agyen, L., Buckland, L., Camaradou, J., Chong, A., Jeyes, F., Kumar, S., Matthews, K. L., Moore, P., Ormerod, J., Price, G., Saibnt-Cricq M., Stabton D., Walker A., Haroon S., Denniston A. K. Calvert, M. J. and TLC group (2023). Considerations for patient and public involvement and engagement in health research. Nature Medicine. https://doi.org/10.1038/s41591-023-02445-x
Auwal, F. I., Copeland, C., Clark, E. J., Naraynassamy, C., McClelland, G. R. (2023). A systematic review of models of patient engagement in the development and life cycle management of medicines. Drug Discovery Today, 28(9), 103702. https://doi.org/10.1016/j.drudis.2023.103702
Bacchini, F. (2023). Family reflections : Prematurity and the power of parent involvement in research. Pediatric Research. https://doi.org/10.1038/s41390-023-02727-7
Bhardwaj, T., Santulli, R. B. (2023). Developing a Novel Advance Planning Tool for Dementia Patient Participation in Scientific Research. The Journal of Clinical Ethics, 34(2), 138‑147. https://doi.org/10.1086/724312
Chen, R. C., Krebill, H., Kennedy, T., Douglas, S., Neufeld, K. L., Welch, D. R., Jernigan, C., Kimminau, K. S., Johnston, K., Hughes, J., Jensen, R. A. (2023). A community engagement training program for basic and translational cancer researchers. Cancer Causes & Control : CCC. https://doi.org/10.1007/s10552-023-01752-5
Conley, J. M., Cadigan, R. J., Davis, A. M., Juengst, E. T., Kuczynski, K., Major, R., Stancil, H., Villa-Palomino, J., Waltz, M., Henderson, G. E. (2023). The Promise and Reality of Public Engagement in the Governance of Human Genome Editing Research. The American Journal of Bioethics : AJOB, 23(7), 9‑16.
https://doi.org/10.1080/15265161.2023.2207502
Milne, R., Aidid, U., Atutornu, J., Bircan, T., Boraschi, D., Costa, A., Henriques, S., Patch, C., Middleton, A. (2023). What Difference Can Public Engagement in Genome Editing Make, and for Whom? The American Journal of Bioethics : AJOB, 23(7), 58‑60.
https://doi.org/10.1080/15265161.2023.2207545
Babatunde, S., Ahmed, S., Santana, M.J., Nielssen I., Zelinsky S., Ambasta A. (2023). Working together in health research: a mixed-methods patient engagement evaluation. Research Involvement and Engagement 9, 62. https://doi.org/10.1186/s40900-023-00475-w
Lobban, D., Oliver, J., Davio, K., Seddik, K., Porkess, V. (2023). Evaluation of the quality of patient involvement in a patient-led analysis of the lived experience of a rare disease. Research Involvement and Engagement, 9(1), 35. https://doi.org/10.1186/s40900-023-00445-2
Miller, T., Reihlen, M. (2023). Assessing the impact of patient-involvement healthcare strategies on patients, providers, and the healthcare system : A systematic review. Patient Education and Counseling, 110, 107652. https://doi.org/10.1016/j.pec.2023.107652
Eliacin, J., Matthias, M. S., Cameron, K. A., Burgess, D. J. (2023). Veterans’ views of PARTNER-MH, a peer-led patient navigation intervention, to improve patient engagement in care and patient-clinician communication : A qualitative study. Patient Education and Counseling, 114, 107847. https://doi.org/10.1016/j.pec.2023.107847
Keij, S. M., Lie, H. C., Laidsaar-Powell, R., Kunneman, M., de Boer, J. E., Moaddine, S., Stiggelbout, A. M., Pieterse, A. H. (2023). Patient-related characteristics considered to affect patient involvement in shared decision making about treatment : A scoping review of the qualitative literature. Patient Education and Counseling, 111, 107677. https://doi.org/10.1016/j.pec.2023.107677
Sagen, J. S., Smedslund, G., Simonsen, A. E., Habberstad, A., Kjeken, I., Dagfinrud, H., Moe, R. H. (2023). Patient engagement in the development and delivery of healthcare services : A systematic scoping review. BMJ Open Quality, 12(2), e002309. https://doi.org/10.1136/bmjoq-2023-002309
Snowdon, C., Silver, E., Charlton, P., Devlin, B., Greenwood, E., Hutchings, A., Moug, S., Vohra, R., Grieve, R. (2023). Adapting Patient and Public Involvement processes in response to the Covid-19 pandemic. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13771
Dodd, S., Gorst, S. L., Young, A., Lucas, S. W., Williamson, P. R. (2023). Patient participation impacts outcome domain selection in core outcome sets for research : An updated systematic review. Journal of Clinical Epidemiology, S0895-4356(23)00073-2. https:/
Pratte, M.-M., Audette-Chapdelaine, S., Auger, A.-M., Wilhelmy, C., Brodeur, M. (2023). Researchers’ experiences with patient engagement in health research : A scoping review and thematic synthesis. Research Involvement and Engagement, 9(1), 22. https://doi.org/10.1186/
Gonzalez, M., Ogourtsova, T., Zerbo, A., Lalonde, C., Spurway, A., Gavin, F., Shikako, K., Weiss, J. A., Majnemer, A. (2023). Patient engagement in a national research network : Barriers, facilitators, and impacts. Research Involvement and Engagement, 9(1), 7. https://doi.org/10.1186/s40900-023-00418-5
McVey, L., Frost, T., Issa, B., Davison, E., Abdulkader, J., Randell, R., Alvarado, N., Zaman, H., Hardiker, N., Cheong, V.-L., Woodcock, D. (2023). Working together : Reflections on how to make public involvement in research work. Research Involvement and Engagement, 9(1), 14. https://doi.org/10.1186/s40900-023-00427-4
Marcu, A., McGregor, F., Egan, B., Hill C., Cook T., Arbr A. (2023). Developing sustainable patient and public involvement in mesothelioma research: multi-method exploration with researchers, patients, carers, and patient organisations. Res Involv Engagem 9, 15. https://doi.org/10.1186/s40900-023-00426-5
O’Hanlon C. E., Giannitrapani K. F., Gamboa R. C., Walling A.-M., Lindvall C., Garrido M., Asch S. M., Lorenz K. A. (2023)Integrating Patient and Expert Perspectives to Conceptualize High-Quality Palliative Cancer Care for Symptoms in the US Veterans Health Administration: A Qualitative Study. INQUIRY: The Journal of Health Care Organization, doi/10.1177/00469580231160374
Buckley, C., Treweek, S., Laidlaw, L., Shiely, F. (2023). Patient and Public Involvement (PPI) in outcome selection in breast cancer and nephrology trials. Trials, 24(1), 93. https://doi.org/10.1186/s13063-022-06980-9
Estrup, S., Barot, E., Mortensen, C. B., Anthon, C. T., Crescioli, E., Kjaer, M.-B. N., Vesterlund, G. K., Bruun, C. R. L., Collet, M. O., Rasmussen, B. S., Sivapalan, P., Poulsen, L. M., Møller, M. H., Perner, A., & Granholm, A. (2023). Patient and public involvement in contemporary large intensive care trials : A meta-epidemiological study. Acta Anaesthesiologica Scandinavica, 67(3), 256‑263.
https://doi.org/10.1111/aas.14183
McKenna, V. B., Sixsmith, J., Byrne, N. (2023). Patient public involvement (PPI) in health literacy research : Engagement of adults with literacy needs in the co-creation of a hospital-based health literacy plan. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy.
https://doi.org/10.1111/hex.13736
Schoemaker, C. G., Richards, D. P., de Wit, M. (2023). Matching researchers’ needs and patients’ contributions : Practical tips for meaningful patient engagement from the field of rheumatology. Annals of the Rheumatic Diseases, 82(3), 312‑315. https://doi.org/10.1136/ard-2022-223561
Fouladi, N., Tchangalova, N., Ajayi, D., Millwee, E., Lovett, C., Del Sordi, A., Liggett, S., De Silva, M., Bonilla, L., Nkwonta, A., Ramnarine, L., Munoz, A., Frazer, K., Kroll, T. (2023). COVID-19 Public Health Measures and Patient and Public Involvement in Health and Social Care Research : An Umbrella Review. International Journal of Environmental Research and Public Health, 20(6).
https://doi.org/10.3390/ijerph20064887
Schuster, A. L. R., Hampel, H., Paskett, E. D., Bridges, J. F. P. (2023). Rethinking Patient Engagement in Cancer Research. The Patient, 16(2), 89‑93. https://doi.org/10.1007/s40271-022-00604-9
Bergin, R. J., Short, C. E., Davis, N., Marker, J., Dawson, M. T., Milton, S., McNamara, M., Druce, P., Milley, K., Karnchanachari, N., Skaczkowski, G. (2023). The nature and impact of patient and public involvement in cancer prevention, screening and early detection research : A systematic review. Preventive Medicine, 167, 107412.
https://doi.org/10.1016/j.ypmed.2022.107412
Blaylock, R. (2023). Patient and Public Involvement (PPI) in abortion research : An exploratory survey. BMJ Sexual & Reproductive Health, 49(1), 69. https://doi.org/10.1136/bmjsrh-2022-201648
Capobianco, L., Faija, C., Cooper, B., Brown, L., McPhillips, R., Shields, G., Wells, A. (2023). A framework for implementing Patient and Public Involvement in mental health research : The PATHWAY research programme benchmarked against NIHR standards. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13676
Crowther, D., McCulloch, H., Wong, H., Mackay, R., Johnson, C., Chorney, J., Ritchie, K., Lawrence, L., Bishop, A., Helwig, M., Curran, J. (2023). Children, young people and parent engagement in health intervention design and implementation : A scoping review. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 26(1), 1‑15.
https://doi.org/10.1111/hex.13572
Loria-Rebolledo, L. E., Watson, V., Hassan, S., Gabbay, M., Tahir, N., Hossain, M., Goodall, M., Frith, L. (2023). Public contributors’ preferences for the organization of remote public involvement meetings in health and social care : A discrete choice experiment study. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 26(1), 146‑159.
https://doi.org/10.1111/hex.13641
Özdemir, V. (2023). Public Engagement and Global Governance of Science : Beyond Instrumentalism. Omics : A Journal of Integrative Biology. https://doi.org/10.1089/omi.2022.0190
Prebeg, M., Patton, M., Desai, R., Smith, M., Krause, K., Butcher, N., Monga, S. (2023). From participants to partners : Reconceptualising authentic patient engagement roles in youth mental health research. The Lancet. Psychiatry, 10(2), 139‑145. https://doi.org/10.1016/S2215-0366(22)00377-7
Røssvoll, T. B., Hanssen, T. A., Rosenvinge, J. H., Liabo, K., Pettersen, G. (2023). Patient and Public Involvement in Occupational Therapy Health Research : A Scoping Review. OTJR : Occupation, Participation and Health, 43(1), 119‑126. https://doi.org/10.1177/15394492221096058
Schoemaker, C. G., Richards, D. P., de Wit, M. (2023). Matching researchers’ needs and patients’ contributions : Practical tips for meaningful patient engagement from the field of rheumatology. Annals of the Rheumatic Diseases, ard-2022-223561.
https://doi.org/10.1136/ard-2022-223561
Staley, A. (2023). Transforming patient engagement in clinical trials : Moving from a transactional relationship to human-centered care. Drug Discovery Today, 103509. https://doi.org/10.1016/j.drudis.2023.103509
Høgh Egmose C., Heinsvig Poulsen C., Hjorthøj C., Skriver Mundy S.,
Hellström L., Nørgaard Nielsen M., Korsbek L., Rasmussen K., Falgaard Eplov L. (2023) The Effectiveness of Peer Support in Personal and Clinical Recovery—Systematic Review and Meta-Analysis. https://doi.org/10.1176/appi.ps.202100138
Burgher T., Shepherd V., Nollett C. (2023). Effective approaches to public involvement in care home research: a systematic review and narrative synthesis. Research Square : https://doi.org/10.21203/rs.3.rs-2500865/v1
Del Grande C., Kaczorowski J., Pomey M-P. (2023). What are the top priorities of patients and clinicians for the organization of primary cardiovascular care in Quebec? A modified e-Delphi study. PLoS ONE 18(1): e0280051. https://doi.org/10.1371/journal.pone.0280051
Shankland M., Amaryllis Ferrand A., Ganache I., Côté M.-A., Pomey M.-P. (2023). Ethical Foundations of the Accompanying Patient’s Role for an Enhanced Patient Experience: A Scoping Review. J. Pers. Med. 13, 77
Shankland M., Amaryllis Ferrand A., Ganache I., Côté M.-A., Pomey M.-P. (2023). Ethical Foundations of the Accompanying Patient’s Role for an Enhanced Patient Experience: A Scoping Review. J. Pers. Med. 13, 77
Schoemaker C. G., Richards D. P., de Wit M. (2023). Matching researchers’ needs and patients’ contributions: practical tips for meaningful patient engagement from the field of rheumatology, BMJ Ann Rheum Dis, 2023;0:1–4. doi:10.1136/ard-2022-223561
Gladman J. R.F., Phillips B., Frost K., Webster R., Stocks J., Horobin A., Wragg A., Mundey M., Humes D., Woodcock R., Braybrooke R., Junor A., Hendy C., Morgan K., Prior M. (2022). Patient and Public Involvement and Engagement for PhD Students. East Midlands Research into Ageing Network (EMRAN). Issue 49, December
Ali, A. Z., Wright, B., Curran, J. A., Newton, A. S. (2022). Review : Patient engagement in child, adolescent, and youth mental health care research—A scoping review. Child and Adolescent Mental Health.
https://doi.org/10.1111/camh.12615
Bertorello, D., Brichetto, G., Folkvord, F., Theben, A., Zaratin, P. (2022a). A Systematic Review of Patient Engagement Experiences in Brain Disorders. Patient Related Outcome Measures, 13, 259‑272.
https://doi.org/10.2147/PROM.S256396
Dawes, P., Arru, P., Corry, R., McDermott, J. H., Garlick, J., Guest, H., Howlett, E., Jackson, I., James, R., Keane, A., Murray, C., Newman, W., Visram, A., Munro, K. J. (2022). Patient and public involvement in hearing research : Opportunities, impact and reflections with case studies from the Manchester Centre for Audiology and Deafness. International Journal of Audiology, 1‑9.
https://doi.org/10.1080/14992027.2022.2155881
Estrup, S., Barot, E., Mortensen, C. B., Anthon, C. T., Crescioli, E., Kjaer, M.-B. N., Vesterlund, G. K., Bruun, C. R. L., Collet, M. O., Rasmussen, B. S., Sivapalan, P., Poulsen, L. M., Møller, M. H., Perner, A., Granholm, A. (2022). Patient and public involvement in contemporary large intensive care trials : A meta-epidemiological study. Acta Anaesthesiologica Scandinavica. https://doi.org/10.1111/aas.14183
Sieck, C. J., Nicks, S. E., Salem, J., DeVos, T., Thatcher, E., Hefner, J. L. (2022). Addressing Equity and Social Needs : The New Frontier of Patient Engagement Research. Advances in Health Care Management,
21. https://doi.org/10.1108/S1474-823120220000021008
Ali A Z., Wright B., Curran J. A., Newton A. S.(2022).Review: Patient engagement in child, adolescent, and youth mental health care research – a scoping review. Child an adolescent Mental Health : https://doi.org/10.1111/camh.12615
Jacques B. (2022). Intégrer des patients experts, patients partenaires, patients formateurs ou cochercheurs en cancérologie : une démocratie en santé encore incertaine. Dialogue, 61, pp. 33–53 : doi:10.1017/S0012217322000221
Hards, A., Cameron, A., Sullivan, E., Lornelsen J. (2022). Actualizing community–academic partnerships in research: a case study on rural perinatal peer support. Res Involvment Engagement 8, 73. https://doi.org/10.1186/s40900-022-00407-0 .
Jerofke-Owen T. A., Tobiano G., Eldh A. C. (2022). « Patient engagement, involvement, or participation—entrapping concepts in nurse‐patient interactions: A critical discussionncepts in nurse‐patient interactions: A critical discussion« . Nursing Inquiry, 24/07: https://doi.org/10.1111/nin.12513
Fowler Davies S., Woodward C., Greenfield B., Homer C., Williams K., Hameed W., Riley B., Roberts D., Bryan G. 2022). « Bringing lived experience into research: good practices for public involvement in research ». Perspectives in Public Health. Vol 142 No 4 l, pp. 205-208. DOI: 10.1177/17579139221102229
Beresford-Dent J., Sprange K., Mountain G., Mason C., Wright J., Craig C., Birt L. (2022). Embedding patient and public involvement in dementia research : Reflections from experiences during the « Journeying through Dementia » randomised controlled trial. Dementia (London, England), 14713012221106816. https://doi.org/10.1177/14713012221106816
Bharadia T., Vandercappellen J., Chitnis T., Eelen P., Bauer B., Brichetto G., Lloyd A., Schmidt H., King M., Fitzgerald J., Hach T., Hobart J. (2022). Patient-reported outcome measures in MS: Do development processes and patient involvement support valid quantification of clinically important variables? Multiple Sclerosis Journal – Experimental, Translational and Clinical, 8(2),20552173221105640.
Fox G., Fergusson D. A., Nicholls S. G., Smith M., Stacey D., Lalu, M. M. (2022). Recognizing patient partner contributions to health research : A mixed methods research protocol. Research Involvement and Engagement, 8(1), 24. https://doi.org/10.1186/s40900-022-00354-w
Gibbins K. J., Lo J. O. (2022). What Matters to Whom : Patient and Public Involvement in Research. Clinical Obstetrics and Gynecology, 65(2), 268‑276.
https://doi.org/10.1097/GRF.0000000000000694
Mc Menamin R., Isaksen J., Manning M., Tierney E. (2022). Distinctions and blurred boundaries between qualitative approaches and public and patient involvement (PPI) in research. International Journal of Speech-Language Pathology, 1‑12.
https://doi.org/10.1080/17549507.2022.2075465
Mores B., Drossart I., Jennings C., Moons, P. (2022). Patient involvement in scientific journals : A new road for the European Journal of Cardiovascular Nursing. European Journal of Cardiovascular Nursing, 21(4), 295‑296. https://doi.org/10.1093/eurjcn/zvac025
Polanco A., Al-Saadi R., Tugnait S., Scobie N., Pritchard-Jones K. (2022). Setting international standards for patient and parent involvement and engagement in childhood, adolescent and young adult cancer research : A report from a European Collaborative Workshop. Cancer Reports (Hoboken, N.J.), 5(6), e1523. https://doi.org/10.1002/cnr2.1523
Vanderhout S., Nicholls S., Monfaredi Z., Hampel C., Ashdown L., Bilodeau M., Rich S., Shea B., Fergusson D. (2022). Facilitating and supporting the engagement of patients, families and caregivers in research : The « Ottawa model » for patient engagement in research. Research Involvement and Engagement, 8(1), 25. https://doi.org/10.1186/s40900-022-00350-0
Wind A., van der Linden C., Hartman E., Siesling S., Van Harten W. (2022). Patient involvement in clinical pathway development, implementation and evaluation—A scoping review of international literature. Patient Education and Counseling, 105(6), 1441‑1448. https://doi.org/10.1016/j.pec.2021.10.007
Yamaguchi S., Abe M., Kawaguchi T., Igarashi M., Shiozawa T., Ogawa M., Yasuma N., Sato S., Miyamoto Y., Fujii C. (2022). Multiple stakeholders’ perspectives on patient and public involvement in community mental health services research : A qualitative analysis. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy.
https://doi.org/10.1111/hex.13529
Youssef E., Mellor D., Walkerly S., Wright D. J. (2022). Enhancing pharmacy practice doctoral research with patient and public involvement. The International Journal of Pharmacy Practice, 30(3), 288‑291. https://doi.org/10.1093/ijpp/riac014
Zvonareva O., Craveț C., Richards D. P. (2022). Practices of patient engagement in drug development : A systematic scoping review. Research Involvement and Engagement, 8(1), 29. https://doi.org/10.1186/s40900-022-00364-8
Carlson L. E., Karim S, Labelle L.. E. (2022). The ACTION Centre as a Model for Patient Engagement and Knowledge Translation in Integrative Oncology Practice, Training, and Research. Integrative Cancer Therapies , Volume 21: 1–4 : https://doi.org/10.1177/15347354221103277
Leba I., Magnin S., Boeker M., Pro H.-U (2022). Classification of Patient Portals Described in Evaluation Studies Using the TOPCOP Taxonomy. Healthcare of the Future 2022. This article is published online with Open Access by IOS Press and distributed under the terms of the Creative Commons Attribution Non-Commercial License 4.0 (CC BY-NC 4.0). doi:10.3233/SHTI220315
Fox, G., Fergusson, D.A., Nicholls G., Smith M., StaceyD., Lalu. M. M. (2022). Recognizing patient partner contributions to health research: a mixed methods research protocol. Res Involv Engagem 8, 24 (2022). https://doi.org/10.1186/s40900-022-00354-w
Vanderhout, S., Nicholls, S., Monfaredi, Z., Hampel C., Hashdown L., Bilodeau M., Rich S., Shea B., Fergusson D. (2022). Facilitating and supporting the engagement of patients, families and caregivers in research: the “Ottawa model” for patient engagement in research. Res Involv Engagem 8, 25 (2022). https://doi.org/10.1186/s40900-022-00350-0
Green J., Leadbitter K., Ellis C., et al. (2022). An adapted social communication intervention at home and education to promote social communication change in children with severe autism: the PACT-G RCT. Southampton (UK): National Institute for Health and Care Research. (Efficacy and Mechanism Evaluation, No. 9.3.) Chapter 6, Patient and public involvement. Available from: https://www.ncbi.nlm.nih.gov/books/NBK580572/
Béland S. , Lambert M., Delahunty-Pike A. , Howse D. , Schwarz C. , Chouinard M.-C. , Aubrey-Bassler K. , Burge F. , Doucet S. , Danish A. , Dumont-Samson O. , Bisson M. , Luke A. , Macdonald M. , Gaudreau A., Porter J. , Rubenstein D. , Sabourin V. , Scott C., Warren M. , Wilhelm L. , Hudon C. (2022). « Patient and researcher experiences of patient engagement in primary care health care research: a participatory qualitative study », Health Expectations. doi: 10.1111/hex.13542
Usher S., Denis J.-L. (2022). Exploring expectations and assumptions in the public and patient engagement literature : A meta-narrative review. Patient Education and Counseling, S0738-3991(22)00147-1. https://doi.org/10.1016/j.pec.2022.04.001
Adeyemi I., Sanders C., Ong B. N., Howells K., Quinlivan L., Gorman L., Giles S., Amp M., Monaghan E., Naseem S., Pearson A., Cheraghi-Sohi S. (2022). Challenges and adaptations to public involvement with marginalised groups during the COVID-19 pandemic : Commentary with illustrative case studies in the context of patient safety research. Research Involvement and Engagement, 8(1), 13. https://doi.org/10.1186/s40900-022-00345-x
Boyd J. L., Sugarman J. (2022). Toward Responsible Public Engagement in Neuroethics. AJOB Neuroscience, 13(2), 103‑106.
https://doi.org/10.1080/21507740.2022.2048736
Carlton J., Peasgood T., Mukuria C., Johnson J., Ogden M., Tovey W. (2022). The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB). Journal of Patient-Reported Outcomes, 6(1), 35. https://doi.org/10.1186/s41687-022-00437-y
Derksen-Lazet N. D., Parmentier C. E. J., Wildenbeest J. G., Bont L. J. (2022). Patient Involvement in RSV Research : Towards Patients Setting the Research Agenda. The Journal of Infectious Diseases, jiac110. https://doi.org/10.1093/infdis/jiac110
Etchegary H., Pike A., Patey A. M., Gionet E., Johnston B., Goold S., Francis V., Grimshaw J., Hall A. (2022). Operationalizing a patient engagement plan for health research : Sharing a codesigned planning template from a national clinical trial. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 25(2), 697‑711. https://doi.org/10.1111/hex.13417
Fox G., Fergusson D. A., Foster M., Hawrysh T., Dupont S., Walling D. J., Irwin M., Kekre N., Presseau J., Castillo G., Montroy J., Lalu M. M. (2022). Building a Platform for Meaningful Patient Partnership to Accelerate « Bench-to-Bedside » Translation of Promising New Therapies. Healthcare Quarterly (Toronto, Ont.), 24(SP), 74‑79. https://doi.org/10.12927/hcq.2022.26770
Freebairn L., Song Y. J. C., Occhipinti J.-A., Huntley S., Dudgeon P., Robotham J., Lee G. Y., Hockey S., Gallop G., Hickie I. B. (2022). Applying systems approaches to stakeholder and community engagement and knowledge mobilisation in youth mental health system modelling. International Journal of Mental Health Systems, 16(1), 20. https://doi.org/10.1186/s13033-022-00530-1
Gusset N. (2022). Importance of Patient Involvement in the Value Assessment Process : On the Way Towards Personalised Treatments. PharmacoEconomics, 40(Suppl 1), 7‑10.
https://doi.org/10.1007/s40273-021-01122-6
Klingler C., Wiese L., Arnason G., Ranisch R. (2022). Public Engagement With Brain Organoid Research and Application : Lessons From Genome Editing. AJOB Neuroscience, 13(2), 98‑100.
https://doi.org/10.1080/21507740.2022.2048733
Leese J., Garraway L., Li L., Oelke N., MacLeod M. (2022). Adapting patient and public involvement in patient-oriented methods research : Reflections in a Canadian setting during COVID-19. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 25(2), 477‑481. https://doi.org/10.1111/hex.13387
Merker V. L., Hyde J. K., Herbst A., Solch A. K., Mohr D. C., Gaj L., Dvorin K., Dryden E. M. (2022). Evaluating the Impacts of Patient Engagement on Health Services Research Teams : Lessons from the Veteran Consulting Network. Journal of General Internal Medicine, 37(Suppl 1), 33‑41. https://doi.org/10.1007/s11606-021-06987-z
Pan R. Y., Zhang K., Sivakumar A., Choi D., Wang A. H., Wijeyesekera P., Yu C. H. (2022). Evaluation of Experiences and Impact of Patient Engagement on e-Health Research : A Qualitative Study. Healthcare Quarterly (Toronto, Ont.), 24(SP), 44‑48.
https://doi.org/10.12927/hcq.2022.26775
Price A., Clarke M., Staniszewska S., Chu L., Tembo D., Kirkpatrick M., Nelken Y. (2022). Patient and Public Involvement in research : A journey to co-production. Patient Education and Counseling, 105(4), 1041‑1047. https://doi.org/10.1016/j.pec.2021.07.021
Ristevski I., Kiew J., Hendry M., Prunier M., Noronha R., Al-Hammadi M., Flegg K., Gallie B. L., Paton K., Dimaras H. (2022). The Retinoblastoma Research Booklet : A Catalyst for Patient Involvement in Retinoblastoma Research. Healthcare Quarterly (Toronto, Ont.), 24(SP), 61‑68. https://doi.org/10.12927/hcq.2022.26772
Ryf C., Hofstetter L., Clack L., Puhan M. A., Hincapié C. A. (2022). Involving patients and clinicians in a pilot randomised clinical trial of spinal manual therapy versus nerve root injection for lumbar radiculopathy : Protocol of a patient and public involvement project. BMJ Open, 12(4), e057881. https://doi.org/10.1136/bmjopen-2021-057881
Tingley K., Smith M., Pallone N., Chakraborty P., Potter B. K. (2022). Patient Engagement in a Multi-Stakeholder Workshop to Plan the Collection of Patient-Oriented Outcomes for Children with Inherited Metabolic Diseases. Healthcare Quarterly (Toronto, Ont.), 24(SP), 81‑85.
https://doi.org/10.12927/hcq.2022.26769
Vanderhout S. M., Birken C. S., Wong P. D., Weir S., Batten J., Maguire J. L. (2022). Parent Engagement in a COVID-19 Cohort Study of Children and Families : Successes, Challenges and Next Steps. Healthcare Quarterly (Toronto, Ont.), 24(SP), 31‑34. https://doi.org/10.12927/hcq.2022.26777
van Schelven F., Boeije H., Rademakers J. (2022). Evaluating meaningful impact of Patient and Public Involvement : A Q methodology study among researchers and young people with a chronic condition. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 25(2), 712‑720. https://doi.org/10.1111/hex.13418
Henry-Noel N., Paton M., Wong R., Dawdy K., Karim A., Soliman H., Di Prospero L., Harnett N., DeAngelis C., Desai C., Wiljer D., Harth T., Akkila S., Szumacher E. (2022), « Patient engagement in the Continuing Professional Development programs within the department of radiation oncology at the University of Toronto (UTDRO): A qualitative study« , Journal of Medical Imaging and Radiation Sciences : https://doi.org/10.1016/j.jmir.2022.03.003.
Backman, C. L., Davidson, E., Martini, R. (2022). « Advancing Patient and Community Engagement in Occupational Therapy Research« . Canadian Journal of Occupational Therapy. Revue Canadienne d’ergotherapie, 89(1),
pp. 4‑12. https://doi.org/10.1177/00084174211072646
Parry M., Ceroni T., Wells D., Richards D. P., Toupin-April K., Ansari H., Bjørnnes A. K., Burnside H., Cavallo S., Day A., Ellis A., Feldman D., Gilron I., Najam A., Zulfiqar Z., Marlin S. (2022). « Patient engagement partnerships in clinical trials (PEP-CT) : Protocol for the systematic development and testing of patient partner and investigator decision aids« . BMJ Open, 12(2), e060267. https://doi.org/10.1136/bmjopen-2021-060267
Preston J., Nafria B., Ohmer A., Gaillard S., Dicks P., West L., Turner M. A. (2022). « Developing a More Tailored Approach to Patient and Public Involvement with Children and Families in Pediatric Clinical Research : Lessons Learned« . Therapeutic Innovation & Regulatory Science, 1‑16. https://doi.org/10.1007/s43441-022-00382-4
Colomer-Lahiguera, S., Corbière, T., Reeb-Landry, F., Ninane, F., Addeo, A., Eicher, M. (2022). « Patient involvement in oncology research—Development of a reference framework in French-speaking Switzerland« . Revue medicale suisse, 18 (775), pp. 621‑625.
https://doi.org/10.53738/REVMED.2022.18.775.621
Condon, L., Curejova, J., Leeanne Morgan, D., Miles, G., Barry, D., Fenlon, D. (2022). « Public involvement in participatory research : The experiences of peer interviewers from Roma, Gypsy and Traveller communities« . Nurse Researcher, 30(1), 17‑23.
https://doi.org/10.7748/nr.2022.e1818
Cooper, L., Ahmed, S., Bibeau, C., Buckley, N., Crowe, L., Decoste, J., Keely, E., McCutcheon, T., Singer, A. G., Visca, R., Liddy, C. (2022). « Impact of patient partner co-design on survey development in primary care research : Case study« . Canadian Family Physician Medecin de Famille Canadien, 68(3), pp. 235‑236.
https://doi.org/10.46747/cfp.6803235
Farrell, M., Wilkinson, C. (2022). « A reappraisal of public engagement in Oxford during the pandemic : Three case studies« . Research Involvement and Engagement, 8(1), 10. https://doi.org/10.1186/s40900-022-00343-z
Gorelick, P. B. (2022). « Community Engagement : Lessons Learned From the AAASPS and SDBA« . Stroke, 53(3), pp. 654‑662.
https://doi.org/10.1161/STROKEAHA.121.034554
Groot, B., Abma, T. (2022). « Ethics framework for citizen science and public and patient participation in research« . BMC Medical Ethics, 23(1), 23. https://doi.org/10.1186/s12910-022-00761-4
Heague, M., Ray, C., Bowers, J., Guckian, J., Arents, B. W. M., Layton, A. (2022). « Patient and Public Involvement in Dermatology Research : A Review« . American Journal of Clinical Dermatology, 1‑11.
https://doi.org/10.1007/s40257-022-00680-5
Greenwood K., Robertson S., Vogel E., Vella C., Ward T., McGourty A., Sacadura C., Hardy A., Rus-Calafell M., Collett N., Emsley R., Freeman D., Fowler D., Kuipers E., Bebbington P., Dunn G., Garety P. (2022). « The impact of Patient and Public Involvement in the SlowMo study : Reflections on peer innovation« . Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 25(1), pp. 191‑202. https://doi.org/10.1111/hex.13362
Jensen, A. M., Jensen, E. A., Duca, E., Daly, J., Mundow, N., Roche, J. (2022). « How does moving public engagement with research online change audience diversity ? Comparing inclusion indicators for 2019 & 2020 European Researchers’ night events« . PloS One, 17(3), e0262834. https://doi.org/10.1371/journal.pone.0262834
Merker, V. L., Hyde, J. K., Herbst, A., Solch, A. K., Mohr, D. C., Gaj, L., Dvorin, K., Dryden, E. M. (2022). « Evaluating the Impacts of Patient Engagement on Health Services Research Teams : Lessons from the Veteran Consulting Network« . Journal of General Internal Medicine. https://doi.org/10.1007/s11606-021-06987-z
Mew, L., Heaslip, V., Immins, T., Wainwright, T. W. (2022). « A Patient and Public Involvement Study to Explore the Need for Further Research into the Experience of Younger Patients Undergoing Total Hip Arthroplasty« . Journal of Patient Experience, 9, 23743735221083170.
https://doi.org/10.1177/23743735221083166
Sá-Sousa, A., Rodrigues, T., Fernandes, S., Santos, A. M., Garcia-Lema, I., Costa, E. D., Chaves Loureiro, C., Boechat, J. L., Baía Reis, A., Figueiredo, D., Fonseca, J. A., Neves, A. L., Jácome, C. (2022). « ConectAR: Collaborative network of patients with asthma and carers actively involved in health research. A protocol for patient and public involvement« . European Annals of Allergy and ClinicalImmunology. https://doi.org/10.23822/
EurAnnACI.1764-1489.249
Schandl, A., Mälberg, K., Haglund, L., Arnberg, L., Lagergren, P. (2022). « Patient and public involvement in oesophageal cancer survivorship research« . Acta Oncologica (Stockholm, Sweden), 61(3), pp. 371‑377.
https://doi.org/10.1080/0284186X.2021.2016950
Sousa, V., Moaven, H., Yogarajah, A., Betancur, D., Beltrán, V., Lara-Pompa, N., Nanayakkara, L., Donos, N. (2022). « Public involvement in research : Exploring periodontal and peri-implant health and disease in partnership with Perio@RLH patient forum members« . British Dental Journal, 232(6),
pp. 371‑374. https://doi.org/10.1038/s41415-022-3989-0
Taflan, S. S., Esatoglu, S. N., Ozguler, Y., Yurttas, B., Melikoglu, M., Hatemi, G. (2022). « Challenges in optimising patient participation in research : Do patients participating in meetings represent the actual patient population with Behçet’s syndrome? » Annals of the Rheumatic Diseases, 81(3), pp. 448
‑450. https://doi.org/10.1136/annrheumdis-2021-221654
Tan, R. K. J., Wu, D., Day, S., Zhao, Y., Larson, H. J., Sylvia, S., Tang, W., Tucker, J. D. (2022). « Digital approaches to enhancing community engagement in clinical trials« . NPJ Digital Medicine, 5(1), 37.
https://doi.org/10.1038/s41746-022-00581-1
van Eeghen, C., Hitt, J. R., Pomeroy, D. J., Reynolds, P., Rose, G. L., O’Rourke Lavoie, J. (2022). « Co-creating the Patient Partner Guide by a Multiple Chronic Conditions Team of Patients, Clinicians, and Researchers : Observational Report« . Journal of General Internal Medicine, 1‑7. https://doi.org/10.1007/s11606-021-07308-0
Youssef E., Mellor D., Walkerly S., Wright D. J. (2022). “Enhancing pharmacy practice doctoral research with patient and public involvement”. International Journal of Pharmacy Practice, riac014, 09 March, https://doi.org/10.1093/ijpp/riac014
Biggane, A.M., Young, B., Williamson, P.R. et al. (2022) Enhancing patient and public contribution in health outcome selection during clinical guideline development: an ethnographic study. BMC Health Serv Res 22, 361 . https://doi.org/10.1186/s12913-022-07736-6.
Bartel, R., Hoel, S., Mckinley, L., Baubie, K., Keating, J. A., afdar, N. (2022). « The patient engagement in education and research (PEER) healthcare-associated infection prevention project : A patient perspective« . American Journal of Infection Control, 50(2), pp. 233‑234. https://doi.org/10.1016/j.ajic.2021.10.011
Buchanan, F., Peasgood, A., Easton, M., Haas, K., Narayanan, U. (2022). » The Research Family Advisory Committee : The patient and family view of implementing a research-focused patient engagement strategy« . Research Involvement and Engagement, 8(1), 2.
https://doi.org/10.1186/s40900-022-00335-z
Condon L., Curejova J., Morgan D. L., Miles G., Barry D., Fenlon D. (2022). « Public involvement in participatory research : The experiences of peer interviewers from Roma, Gypsy and Traveller communities« . Nurse Researcher. https://doi.org/10.7748/nr.2022.e1818
Del Gaizo V., Kohlheim M. (2022). « Patient Engagement in Pediatric Rheumatology Research ». Rheumatic Diseases Clinics of North America, 48(1), 1‑13. https://doi.org/10.1016/j.rdc.2021.09.013
Dember, L. M. (2022). What Patients Teach Us About Patient Engagement in Research. Clinical Journal of the American Society of Nephrology : CJASN, 17(2), pp. 176‑178.
https://doi.org/10.2215/CJN.16561221
Richards D. P., Cobey K. D., Proulx L., Dawson S., de Wit M., Toupin-April K. (2022). « Identifying potential barriers and solutions to patient partner compensation (payment) in research« . Research Involvement and Engagement, 8(1), 7. https://doi.org/10.1186/s40900-022-00341-1
Roberts J. C., Recht M., Gonzales S. E., Stanley J., Denne M., Caicedo J., Rockwood K. (2022). « Incorporating the patient voice and patient engagement in GOAL-Hēm : Advancing patient-centric hemophilia care« . Research and Practice in Thrombosis and Haemostasis, 6(1), e12655. https://doi.org/10.1002/rth2.12655
Schandl A., Mälberg K., Haglund L., Arnberg L., Lagergren P. (2022). « Patient and public involvement in oesophageal cancer survivorship research« . Acta Oncologica (Stockholm, Sweden), 61(3), pp. 371‑377. https://doi.org/10.1080/0284186X.2021.2016950
Van der Wouden P., Hilverda F., Van der Heijden G., Shemesh H., Pittens C. (2022). « Establishing the research agenda for oral healthcare using the Dialogue Model-patient involvement in a joint research agenda with practitioners« . European Journal of Oral Sciences, 130 (1),e12842. https://doi.org/10.1111/eos.12842
Cluley V., Ziemann A., Feeley C., Olander E. K., Shamah S., Stavropoulou C. (2022). « Mapping the role of patient and public involvement during the different stages of healthcare innovation : A scoping review« . Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13437
Miller-Rosales C., Miake-Lye I. M., Brewster A. L., Shortell S. M., Rodriguez H. P. (2022). « Pathways for Primary Care Practice Adoption of Patient Engagement Strategies« . Health Services Research. https://doi.org/10.1111/1475-6773.13959
Del Gaizo V., Kohlheim M. (2022). « Patient Engagement in Pediatric Rheumatology Research« . Rheumatic Diseases Clinics of North America, 48 (1), pp. 1‑13. https://doi.org/10.1016/j.rdc.2021.09.013
De Weger E., Baan C., Bos C., Luijkx K., Drewes H. (2022). « They need to ask me first ». Community engagement with low-income citizens. A realist qualitative case-study ». Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13415
Loignon C., Dupéré S., Leblanc C., Truchon K., Bouchard A., Arsenault J., Pinheiro Carvalho J., Boudreault-Fournier A., Marcotte S. A. (2021). « Equity and inclusivity in research : Co-creation of a digital platform with representatives of marginalized populations to enhance the involvement in research of people with limited literacy skills ». Research Involvement and Engagement, 7(1), 70. https://doi.org/10.1186/s40900-021-00313-x
Aguayo G. A., Goetzinger C., Scibilia R., Fischer A., Seuring T., Tran V.-T., Ravaud P., Bereczky T., Huiart L., Fagherazzi G. (2021). « Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research : Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study« . Journal of Medical Internet Research, 23(12), e25743.
https://doi.org/10.2196/25743
Merle R, Pison C, Logerot S, Deschaux C., Arnol N., Roustit M., Tamisier R., Pépin J.-L., Bore J. C. (2021). Peer-driven intervention to help patients resume CPAP therapy following discontinuation: a multicentre, randomised clinical trial with patient involvement. BMJ Open 2021;11:e053996. doi:10.1136/
Ellis, U., Kitchin, V., Vis-Dunbar, M. (2021). Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses : Rapid Review. Journal of Participatory Medicine, 13(2), e27141.
https://doi.org/10.2196/27141
Aries A. M., Bailey P., Hunter S. M. (2021). « The mutual benefits of patient and public involvement in research : An example from a feasibility study (MoTaStim-Foot)« . Research Involvement and Engagement, 7(1), 87.
https://doi.org/10.1186/s40900-021-00330-w
Bradshaw E., Whale K., Burston A., Wylde V., Gooberman-Hill R. (2021). « Value, transparency, and inclusion : A values-based study of patient involvement in musculoskeletal research« . PloS One, 16(12), e0260617. https://doi.org/10.1371/journal.pone.0260617
Etchegary H., Pike A., Patey A. M., Gionet E., Johnston B., Goold S., Francis V., Grimshaw J., Hall A. (2021). « Operationalizing a patient engagement plan for health research : Sharing a codesigned planning template from a national clinical trial« . Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/
10.1111/hex.13417
Fletcher J., Swift A., Hewison M., C Cooper S. (2021). « Patient and public involvement in research design and oversight« . Nurse Researcher, 29(4),
pp. 11‑18. https://doi.org/10.7748/nr.2021.e1786
Gray R., Brasier C., Zirnsak T.-M., Ng A. H. (2021). « Reporting of patient and public involvement and engagement (PPIE) in clinical trials published in nursing science journals : A descriptive study« . Research Involvement and Engagement, 7(1), 88. https://doi.org/10.1186/s40900-021-00331-9
Schandl A., Mälberg K., Haglund L., Arnberg L., Lagergren P. (2021). « Patient and public involvement in oesophageal cancer survivorship research« . Acta Oncologica (Stockholm, Sweden), 1‑7. https://doi.org/
10.1080/0284186X.2021.2016950
Pétré B., Margat A., Crozet C. (2021). » Un appel aux recommandations pour l’enseignement de l’ETP en formation initiale des professionnels de santé : regards croisés entre exploration de la littérature et avis des acteurs européens de l’ETP« . Educ Ther Patient/Ther Patient Educ, 13, 10202, 28 mai 2021
Lohse, B., Cunningham-Sabo, L. (2021). Quantifying parent engagement in the randomized Fuel for Fun impact study identified design considerations and BMI relationships. BMC Medical Research Methodology, 21(1), 205.
https://doi.org/10.1186/s12874-021-01398-4
Ormstad, H., Jamtvedt, G., Svege, I., Crowe, S. (2021). The Bridge Building Model : Connecting evidence-based practice, evidence-based research, public involvement and needs led research. Research Involvement and Engagement, 7(1), 77. https://doi.org/10.1186/s40900-021-00320-y
Rodriguez-Diaz, C. E., Davis, W., Ellis, M. V., Cameron, M. S., Donastorg, Y., Bowleg, L., Greenberg, A., Kerrigan, D. (2021). Disrupting the Systems : Opportunities to Enhance Methodological Approaches to Address Socio-Structural Determinants of HIV and End the Epidemic Through Effective Community Engagement. AIDS and Behavior, 25(Suppl 2), 225‑231.
https://doi.org/10.1007/s10461-021-03475-7
Selman, L. E., Clement, C., Douglas, M., Douglas, K., Taylor, J., Metcalfe, C., Lane, J. A., Horwood, J. (2021). Patient and public involvement in randomised clinical trials : A mixed-methods study of a clinical trials unit to identify good practice, barriers and facilitators. Trials, 22(1), 735.
https://doi.org/10.1186/s13063-021-05701-y
Pickering, E. C., Hanley, B., Bell, P., Gath, J., Hanlon, P., Oldroyd, R., Stephens, R., Tweed, C. D. (2021). Formalising the induction of patient and public involvement contributors on trial oversight committees. Research Involvement and Engagement, 7(1), 42. https://doi.org/10.1186/s40900-021-00269-y
Papoulias, S. C., Callard, F. (2021). ’A limpet on a ship’ : Spatio-temporal dynamics of patient and public involvement in research. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 24(3), 810‑818. https://doi.org/10.1111/hex.13215
Yu, Q. J., Pun, J. (2021). Promoting Patient Engagement in Medical Informed Consent—A Qualitative Study of Chinese Doctors’ Communication Strategies. Health Communication, 1‑9. https://doi.org/
10.1080/10410236.2021.1932287
Rouncefield-Swales A., Harris J., Carter B., Bray L., Bewley, T., Martin R. (2021). Children and young people’s contributions to public involvement and engagement activities in health-related research : A scoping review. PloS One, 16(6), e0252774. https://doi.org/10.1371/
journal.pone.0252774
Sine, S., de Bruin, A., Getz, K. (2021). Patient Engagement Initiatives in Clinical Trials : Recent Trends and Implications. Therapeutic Innovation & Regulatory Science, 1‑7. https://doi.org/10.1007/s43441-021-00306-8
Schilling, I., Bleidorn, J., Ehrmann, U., Müller-Fries, E., Rathjen, K. I., & Saedler, K. (2021). Opportunities and challenges of active patient involvement in clinical research in Germany—From the perspectives of a patient representative, a clinical researcher and two staff members of research funding management. Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen, 163, 66‑75. https://doi.org/10.1016/
j.zefq.2021.03.003
Zidaru, T., Morrow, E. M., & Stockley, R. (2021). Ensuring patient and public involvement in the transition to AI-assisted mental health care : A systematic scoping review and agenda for design justice. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/10.1111/hex.13299
Tremblay, D., Touati, N., Usher, S., Bilodeau, K., Pomey, M.-P., Lévesque, L. (2021). Patient participation in cancer network governance : A six-year case study. BMC Health Services Research, 21(1), 929. https://doi.org/10.1186/
s12913-021-06834-1
Gross o., Gagnayre R. (2021). » Diminuer les injustices épistémiques au moyen d’enseignement par et avec les patients : l’expérience pragmatiste de la faculté de médecine de Bobigny« . Revue Canadienne de bioéthique/
Canadian Journal of Bioethics. Vol. 4, N°1, pp. 70-78.
Johnson, H., Davies, J. M., Leniz, J., Chukwusa, E., Markham, S., Sleeman, K. E. (2021). « Opportunities for public involvement in big data research in palliative and end-of-life care« . Palliative Medicine, 35(9), pp. 1724‑1726.
https://doi.org/10.1177/02692163211002101
Grant, S., Armstrong, C., Khodyakov, D. (2021). Online Modified-Delphi : A Potential Method for Continuous Patient Engagement Across Stages of Clinical Practice Guideline Development. Journal of General Internal Medicine, 36(6), 1746‑1750. https://doi.org/10.1007/s11606-020-06514-6
Hamilton, C. B., Hoens, A. M., McKinnon, A. M., McQuitty, S., English, K., Hawke, L. D., Li, L. C. (2021). Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 24(3), 863‑879. https://doi.org/10.1111/hex.13227
Kearns, C., Eathorne, A., Semprini, A., Braithwaite, I., Beasley, R. (2021). « Public engagement with clinical research on social media; which visual medium works best ? A 5-year retrospective analysis ». Journal of Visual Communication in Medicine, 44(4), pp. 157‑165. https://doi.org/10.1080/
17453054.2021.1950525
Kroese, K., Porter, K., Surridge, H., Tembo, D. (2021). « Challenges and solutions : Surveying researchers on what type of community engagement and involvement activities are feasible in low and middle income countries during the COVID-19 pandemic« . BMJ Open, 11(10), e052135. https://doi.org/
10.1136/bmjopen-2021-052135
Jayes, M., Moulam, L., Meredith, S., Whittle, H., Lynch, Y., Goldbart, J., Judge, S., Webb, E., Meads, D., Hemsley, B., Murray, J. (2021). Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders : The I-ASC Project. Qualitative Health Research, 31(7), 1260‑1274. https://doi.org/10.1177/1049732321994791
Simon E., Arborio S., Halloy A., Hejeoka F. (2020). Les savoirs expérientiels en santé fondements épistémologiques et enjeux identitaires, Charenton le pont: FMSH
Hejoaka F., Halloy A., simon E., Arborio S. (2020). La fabrique des savoirs expérientiels : généalogie de la notion, jalons définitionnels et desccription en situation. in Les savoirs expérientiels en santé fondements épistémologiques et enjeux identitaires, Charenton le pont: FMSH, pp. 11-48.
Heloaka F., Halloy A., Simon E. (2020). Définir les savoirs expérientiels en santé: une revue de littérature en sciences humaines et sociales. In Les savoirs expérientiels en santé fondements épistémologiques et enjeux identitaires, Charenton le pont: FMSH, pp. 49-74.
Musso S. (2020). Professionnaliser l’ »expertise profane »? Retour sur un programme expérimental de formation de « médiateur de santé » entre 1999 et 2005 en France. In Les savoirs expérientiels en santé fondements épistémologiques et enjeux identitaires, Charenton le pont: FMSH, pp. 75-96.
Halabi I, Scholtes B, Voz B., Gillain N, Durieux N., Odero A., Baumann M., Ziegler O., Gagnayre R., Guillaume M., Bragard I., Pétré B. (2020). « « Patient participation” and related concepts: A scoping review on their dimensional composition ». Patient Education and Counseling. Vol. 103, Issue 1, , January 2020, pp. 5-14.
Lechopier N., Granier B. (2020). » Patient expérience. Savoirs expérientiels et épistémologie de la formation médicale ». In, Éducation à la santé. Entre Savoir et Pouvoir, Paris : L’Harmattan.
Gardien E. (2020). « Pairjectivité : des savoirs expérientiels ni objectifs, ni subjectifs« . Éducation et socialisation. Article en ligne.
Voyen M., Böhme P., Germain L., Pétr B., Younsi M., Mathieu J., Ziegler O., Nguyen-Thi P.L. (2019). « Connaissance, perception et définition du concept « Patient Partenaire de Soins » : Qu’en pensent les professionnels de santé impliqués en éducation thérapeutique ? Résultats d’une enquête nationale. », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 335-359.
Louis G., Voz B., Charlier N., Guillaume M., Pétré B., consortium APPS, (2019). « Analyse de l’évolution et de l’état actuel du cadre politico-juridique influençant l’engagement du patient dans le système de soins belge », in, Contribution à l’état de l’art : Retour sur le 1er colloque International en France sur le partenariat de soin avec le patient à partir des communications et écoévaluations. Centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université côte d’azur, pp. 360-377.
Weber J.-C. (2018). Expérience, expertise, expérimentation. in Du malade passif au patient expert! Paris: édition de santé, pp. 173-185
Howard M., Bernard C., Klein D., Tan A. Slaven M., Barwich D., You J. J., Asselin G., Simon J., Heyland D. K. (2018) “Older patient engagement in advance care planning in Canadian primary care practices Results of a multisite survey”. Canadian Family Physician | Le Médecin de famille canadien. Vol 64, pp. 371-377.
Brown P. (1987), « Popular Epidemiology: Community Response to Toxic Waste-Induced Disease in Woburn, Massachusetts and Other Sites », Science, Technology, and Human Values, N° 12 (3-4), pp.76-85.
Implication des patients dans la santé numérique
Hashim, J., Luna Puerta, L., Foong, P. S., Tai, E. S., Yi, H., Smith, H. E. (2024). Codesigning a Digital Type 2 Diabetes Risk Communication Tool in Singapore : Qualitative Participatory Action Research Approach. JMIR Formative Research, 8, e50456. https://doi.org/10.2196/50456
Guala, M. M., Bikic, A., Bul, K., Clinton, D., Nielsen, A. S., Nielsen, H. N., Scarpelli, M., Schneider, L., Christiansen, R. (2024). An in-depth understanding of stakeholders’ experiences about their participation in the co-production of ’Maze Out’ : A serious game for the treatment of eating disorders. Journal of Eating Disorders, 12(1), 178. https://doi.org/10.1186/s40337-024-01136-3
Ferguson, C., William, S., Allida, S. M., Fulcher, J., Jenkins, A. J., Lattimore, J.-D., Loch, L.-J., Keech, A. (2024). A co-design case study of the development of heart failure e-TIPS to support self-management. JMIR Cardio. https://doi.org/10.2196/57328
Fischer, A., Aguayo, G., Pinker, I., Oustric, P., Lachaise, T., Wilmes, P., Larché, J., Benoy, C., Fagherazzi, G. (2024). Co-design of a voice-based app to monitor long COVID symptoms with its end-users : A mixed-method study. Digital Health, 10, 20552076241272671. https://doi.org/10.1177/20552076241272671
Quilter, E. E. V., Downes, S., Deighan, M. T., Stuart, L., Charles, R., Tittensor, P., Junges, L., Kissack, P., Qureshi, Y., Kamaraj, A. K., Brigden, A. (2024). A Digital Intervention for Capturing the Real-Time Health Data Needed for Epilepsy Seizure Forecasting : Protocol for a Formative Co-Design and Usability Study (The ATMOSPHERE Study). JMIR Research Protocols, 13, e60129. https://doi.org/10.2196/60129
Flora L., Darmon D., Darmoni S., Grosjean J., Simon C., Hassanaly P., Dufour J.-C. (2024). Help with Prescribing Mobile Health Applications A Partnership Design. in « Experience in Health Innovation : Ephemeral Fashions or New Paradigm ? – Crossed perspectives in the health ecosystem« , London :Editions Wiley, pp 227-237.
Coulston, F., Spittle, A., McDonald, C., Toovey, R., Cameron, K. L., Attard, K., Binstock, L., Fletcher, I., Delaney, A., Murphy, T., Keating, C., & Sellick, K. (2024). Development and Evaluation of a Framework for Authentic Online Co-Design : Partnership-Focussed Principles-Driven Online Co-Design. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(4), e14138. https://doi.org/10.1111/hex.14138
Levy L., Dadich A., Lowe K.(2024). The Potential for Digital Health to Reframe the Role of Compassion. in Patient Experience Innovation perspectives in the health ecosystem », London :Editions Wiley, pp. 211-226.
Best S., Dadich A., Williams S. (2024). Professional, Team and Digital Identity: The Impact on Patient Experience. in « Experience in Health Innovation : Ephemeral Fashions or New Paradigm ? – Crossed perspectives in the health ecosystem », London :Editions Wiley, pp 89-105
Debenham, J., Birrell, L., Newton, N. C., Devine, E. K., Champion, K. E., Stapinski, L. A., Kershaw, S., Arunogiri, S., Teesson, M., Stockings, E. (2024). Co-design of digital public health substance use resources : A collaboration between young people and experts. Health Promotion Journal of Australia : Official Journal of Australian Association of Health Promotion Professionals. https://doi.org/10.1002/hpja.874
Dang, T. H., Wickramasinghe, N., Forkan, A. R. M., Jayaraman, P. P., Burbury, K., O’Callaghan, C., Whitechurch, A., Schofield, P. (2024). Co-Design, Development, and Evaluation of a Mobile Solution to Improve Medication Adherence in Cancer : Design Science Research Approach. JMIR Cancer, 10, e46979. https://doi.org/10.2196/46979
van Schelven, F., van Weele, M., van der Meulen, E., Wessels, E., Boeije, H. (2024). Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 27(2), e14003. https://doi.org/10.1111/hex.14003
Bertelsen, N., Dewulf, L., Ferrè, S., Vermeulen, R., Schroeder, K., Gatellier, L., Sargeant, I., Luzuriaga, D., Chapman, H., Brooke, N. (2024). Patient Engagement and Patient Experience Data in Regulatory Review and Health Technology Assessment : A Global Landscape Review. Therapeutic Innovation & Regulatory Science, 58(1), 63‑78. https://doi.org/10.1007/s43441-023-00573-7
Khanal, V., Shaw, T., Wills, E., Wakerman, J., Russell, D. J. (2024). Co-design of digital health technologies in Australian First Nations communities. The Lancet. Digital Health, 6(2), e90. https://doi.org/10.1016/S2589-7500(23)00251-0
Bertelsen, N., Dewulf, L., Ferrè, S., Vermeulen, R., Schroeder, K., Gatellier, L., Sargeant, I., Luzuriaga, D., Chapman, H., Brooke, N. (2023). Patient Engagement and Patient Experience Data in Regulatory Review and Health Technology Assessment : A Global Landscape Review. Therapeutic Innovation & Regulatory Science. https://doi.org/10.1007/s43441-023-00573-7
Keogh, A., Mc Ardle, R., Diaconu, M. G., Ammour, N., Arnera, V., Balzani, F., Brittain, G., Buckley, E., Buttery, S., Cantu, A., Corriol-Rohou, S., Delgado-Ortiz, L., Duysens, J., Forman-Hardy, T., Gur-Arieh, T., Hamerlijnck, D., Linnell, J., Leocani, L., McQuillan, T., Neatour I ?, Polhémus A., Remmele W., Saraiva I., Scott K., Sutton N., Van den Brande K., Vereijken B., Wohlrab M., Rochester, L. (2023). Mobilizing Patient and Public Involvement in the Development of Real-World Digital Technology Solutions : Tutorial. Journal of Medical Internet Research, 25, e44206. https://doi.org/10.2196/44206
Lammons, W., Silkens, M., Hunter, J., Shah, S., Stavropoulou, C. (2023). Centering Public Perceptions on Translating AI Into Clinical Practice : Patient and Public Involvement and Engagement Consultation Focus Group Study. Journal of Medical Internet Research, 25, e49303. https://doi.org/10.2196/49303
Voorheis, P., Petch, J., Pham, Q., Kuluski, K. (2023). Maximizing the value of patient and public involvement in the digital health co-design process : A qualitative descriptive study with design leaders and patient-public partners. PLOS Digital Health, 2(10), e0000213.
https://doi.org/10.1371/journal.pdig.0000213
Whale J. L., Pomey M.-P.(2023). Editorial: Where to from here: Advancing patient and public involvement in health technology assessment (HTA) following the COVID-19 pandemic. Fontiers in medical technology, 9 March, DOI 10.3389/fmedt.2023.1168278
Jackson M., Clovin T., Montiel C., Bogdanova E., Côté C., Descoteaux A., Wong C., Dumez V., Pomey M.-P (2023). Adopting a learning pathway approach to patient partnership in telehealth: A proof of concept. journal Preproof. telehealth: https://doi.org/10.1016/j.pecinn.2023.100223
Babatunde, S., Ahmed, S., Santana, M. J., Nielssen, I., Zelinsky, S., Ambasta, A. (2023). Working together in health research : A mixed-methods patient engagement evaluation. Research Involvement and Engagement, 9(1), 62. https://doi.org/10.1186/s40900-023-00475-w
Dalko, K., Kraft, B., Jahn, P., Schildmann, J., Hofstetter, S. (2023). Cocreation of Assistive Technologies for Patients With Long COVID: Qualitative Analysis of a Literature Review on the Challenges of Patient Involvement in Health and Nursing Sciences. Journal of Medical Internet Research, 25, e46297. https://doi.org/10.2196/46297
King-Mullins, E., McElroy, I. E. (2023). Social media for patient engagement. Surgery, S0039-6060(23)00432-4. https://doi.org/10.1016/j.surg.2023.07.005
Jakab, I., Dimitrova, M., Houÿez, F., Bereczky, T., Fövényes, M., Maravic, Z., Belina, I., Andriciuc, C., Tóth, K., Piniazhko, O., Hren, R., Gutierrez-Ibarluzea, I., Czech, M., Tesar, T., Niewada, M., Lorenzovici, L., Kamusheva, M., Manova, M., Savova, A., … Kaló, Z. (2023). Recommendations for patient involvement in health technology assessment in Central and Eastern European countries. Frontiers in Public Health, 11, 1176200.
https://doi.org/10.3389/fpubh.2023.1176200
Sá-Sousa, A., Rodrigues, T., Fernandes, S., Santos, A. M., Garcia-Lema, I., Costa, E. D., Chaves Loureiro, C., Boechat, J. L., Baía Reis, A., Figueiredo, D., Fonseca, J. A., Neves, A. L., Jácome, C. (2023). ConectAR: Collaborative network of patients with asthma and carers actively involved in health research : A protocol for patient and public involvement. European Annals of Allergy and Clinical Immunology, 55(4), 180‑188.
https://doi.org/10.23822/EurAnnACI.1764-1489.249
Almutairi, N., Vlahu-Gjorgievska, E., Win, K. T. (2023). Persuasive features for patient engagement through mHealth applications in managing chronic conditions : A systematic literature review and meta-analysis. Informatics for Health & Social Care, 48(3), 267‑291. https://doi.org/10.1080/17538157.2023.2165083
Chee, A., Abdel-Rasoul, M., Zoretich, K., Diaz, K., Noria, S. F. (2023). Bariatric Patient Engagement in a Pre-surgery Virtual Patient Navigation Platform (VPNP). Obesity Surgery. https://doi.org/10.1007/s11695-023-06558-7
Vallis M., Ryan H., Berard L., Cosson E., Kristensen F. B., Levrat-Guillen F., Nicolas Naiditch, Rabasa-Lhoret R., Polonsky W. ( 2023). How Continuous Glucose Monitoring Can Motivate Self-management: Can Motivation Follow Behaviour? Canadian Journal of Diabetes, Vol. 47, Issue 5, pp. 435-444.
Bavngaard, M. V., Lüchau, E. C., Hvidt, E. A., Grønning, A. (2023). Exploring patient participation during video consultations : A qualitative study. Digital Health, 9, 20552076231180680. https://
Reno, J. E., Ong, T. C., Voong, C., Morse, B., Ytell, K., Koren, R., Kwan, B. W. (2023). Special Section Patient Engagement in Informatics : Engaging patients and other stakeholders in « designing for dissemination » record linkage methods and tools. Applied Clinical Informatics. https://doi.org/
Turner, J. H. (2023). Cancer Care by Committee to be Superseded by Personal Physician-Patient Partnership Informed by Artificial Intelligence. Cancer Biotherapy & Radiopharmaceuticals. https://
Ahn J, Lee K-E. (2023). Experiences of young women with breast cancer in peer support activities and the need for a metaverse-based peer support program: A qualitative study, AsiaPacific Journal of Oncology Nursing, https://doi.org/10.1016/j.apjon.2023.100253.
Wale, J. L., Pomey, M.-P. (2023). Editorial : Where to from here : Advancing patient and public involvement in health technology assessment (HTA) following the COVID-19 pandemic. Frontiers in Medical Technology, 5, 1168278. https://doi.org/10.3389/fmedt.2023.1168278
Lai M.-C. (2023). Pour un développement éthique de l’IA en santé : réflexion pour la construction d’un cadre éthique opérationnel à travers l’exemple de l’oncologie médicale. Thèse de doctorat en éthique médicale, Université Paris-Cité.
Mbanza E.-C. (2022). « La participation des patients : défis et enjeux de la co-innovation en santé connectée ». Le partenariat de soin avec le patient : analyses : Université Côte d’azur, N°4, pp. 39-72
Flora L., Darmon D., Darmoni S., Gorsjean J., Simon C., Hassanaly P., Dufour J.-C. (2022). « Innover par l’aide à la décision dans la relation médecin-patient d’application mobiles : la recherche ApiAppS ». Le partenariat de soin avec le patient : analyses : Université Côte d’azur, N° 4, pp. 73-94.
Banerjee S., Alsop P., Jones L., Cardinal R. N. (2022). Patient and public involvement to build trust in artificial intelligence : A framework, tools, and case studies. Patterns (New York, N.Y.), 3(6), 100506.
Pinho-Gomes A.-C., Stone J., Shaw T., Heath A., Cowl J., Norburn L., Thomas V., Scott S. (2022). Values, principles, strategies, and frameworks underlying patient and public involvement in health technology assessment and guideline development : A scoping review. International Journal of Technology Assessment in Health Care, 38(1), e46.
Adamson P. C. (2022). My Patient Portal, Annals of Internal Medicine, https://doi.org/10.7326/M22-0544
Harrington K., Craven M.-P. , Wilson M. L. , Landowska A. (2022). « Perceptions of Cognitive Training Games and Assessment Technologies for Dementia: Acceptability Study With Patient and Public Involvement Workshops ». JMIR Serious Games 2022;10(2):e32489, doi: 10.2196/32489
Osmanlliu E., Paquette J., Grenier AD., J., Rodriguez Duarte M.A., Bédard S., De Marcellis-Warin N., Zhegu M., Régis, C., Bouthillier M.-E., Lewis P. et al.(2022) Fantastic perspectives and where to find them: involving patients and citizens in digital health research. Res Involv Engagem 8, 37 . https://doi.org/10.1186/s40900-022-00374-6
Osmanlliu E., Paquette J., Rodriguez Duarte M.A., Bédard S., De Marcellis-Warin N., Zhegu M., Régis, C., Bouthillier M.-E., Grenier A.-D., Lewis P. et al. (2022). Public Perspectives on Exposure Notification Apps: A Patient and Citizen Co-Designed Study. J. Pers. Med. 2022, 12, 729. https://doi.org/10.3390/jpm12050729
Bouabida K., Malas K., Talbot A., Desrosiers ME., Lavoie F., Lebouché B., Taghizadeh N., Normandin L., Vialaron C., Fortin O., Lessard D., Pomey M-P. (2022) Healthcare professionals’ perspectives on the use of remote patient-monitoring platforms during the COVID-19 pandemic: a cross-sectional study. publication à J. Pers. Med. https://www.mdpi.com/2075-4426/12/4/529.
De Groot K., Douma J., Paans W., Francke, A. L. (2022). Patient participation in electronic nursing documentation : An interview study among home-care patients. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy. https://doi.org/
10.1111/hex.13492
Khanijahani A., Akinci N., Quitiquit E. (2022). A Systematic Review of the Role of Telemedicine in Blood Pressure Control : Focus on Patient Engagement. Current Hypertension Reports, 1‑12. https://doi.org/
10.1007/s11906-022-01186-5
Fritz B. A., Ramsey B., Taylor D., Shoup J. P., Schmidt J. M., Guinn M., Maddox T. M. (2022). « Association of Race and Neighborhood Disadvantage with Patient Engagement in a Home-Based COVID-19 Remote Monitoring Program« . Journal of General Internal Medicine, 37(4), pp. 838‑846.
https://doi.org/10.1007/s11606-021-07207-4
Idris M. Y., Korin M., Araya F., Chowdhury S., Medina P., Cruz L., Hawkins T.-R., Brown H., Claudio L. (2022). « Including the Public in Public eHealth : The Need for Community Participation in the Development of State-Sponsored COVID-19-Related Mobile Apps« . JMIR MHealth and UHealth, 10(3), e30872. https://doi.org/10.2196/30872
Lee C. (2022). « Leveraging App Technologies to Boost Patient Engagement ». Compendium of Continuing Education in Dentistry (Jamesburg, N.J. : 1995), 43(3), pp. 124‑125.
Smithson M., McLeod M. C., Theiss L., Shao C., Kennedy G., Hollis R., Chu D. I., Hardiman K. M. (2022). « Ileostomy Patients Using Patient Engagement Technology Experience Decreased Length of Stay« . Journal of Gastrointestinal Surgery : Official Journal of the Society for Surgery of the Alimentary Tract, 26(3), pp. 635‑642. https://doi.org/10.1007/s11605-021-05158-z
Diehl T. M., Barrett J. R., Van Doorn R., Cherney Stafford L. M., Hanlon B. M., Weber S. M., Voils C. I., Abbott D. E. (2022). « Promoting patient engagement during care transitions after surgery using mobile technology : Lessons learned from the MobiMD pilot study« . Surgery. https://doi.org/10.1016/
j.surg.2021.12.018
Luderer H., Chiodo L., Wilson A., Brezing C., Martinez S., Xiong X., Gerwien R., Imbert B., Deeg M., Maricich Y., Campbell A. (2022). « Patient Engagement With a Game-Based Digital Therapeutic for the Treatment of Opioid Use Disorder : Protocol for a Randomized Controlled Open-Label, Decentralized Trial« . JMIR Research Protocols, 11(1), e32759. https://doi.org/10.2196/32759
Knowles S. E., Allen D., Donnelly A., Flynn J., Gallacher K., Lewis A., McCorkle G., Mistry M., Walkington P., Brunton L. (2022). « Participatory codesign of patient involvement in a Learning Health System : How can data-driven care be patient-driven care? » Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 25(1), pp.103‑115. https://doi.org/10.1111/hex.13345
Wu, D., An, J., Yu, P., Lin, H., Ma, L., Duan, H., Deng, N. (2021). Patterns for Patient Engagement with the Hypertension Management and Effects of Electronic Health Care Provider Follow-up on These Patterns : Cluster Analysis. Journal of Medical Internet Research, 23(9), e25630. https://doi.org/
10.2196/25630
Aalam A., Osman K., Martini A. (2021). « Telehealth adoption and patient engagement » in A Practical Guide to Emergency Telehealth, Neal Sikka edition, Oxford, pp. 39-50
Bidonde J., Vanstone M., Schwartz L., Abelson J. (2021). » An institutional ethnographic analysis of public and patient engagement activities at a national health technology assessment agency« . International Journal of Technology Assessment in Health Care, 37, e37, pp.1–7. https://doi.org/10.1017/S0266462321000088
Lampa E., Sonnentheil B., Tökés A., Warner, G. (2021). What has the COVID-19 pandemic taught us about conducting patient and public involvement remotely ? Insights from a series of digital meeting observations. Research Involvement and Engagement, 7(1), 73.
Smithson M., McLeod M. C., Theiss L., Shao C., Kennedy G., Hollis R., Chu D. I., Hardiman K. M. (2021). Ileostomy Patients Using Patient Engagement Technology Experience Decreased Length of Stay. Journal of Gastrointestinal Surgery : Official Journal of the Society for Surgery of the Alimentary Tract. https://doi.org/10.1007/s11605-021-05158-z
ARTS et SOIN
Zomer, L., van der Meer, L., van Weeghel, J., Voskes Y. (2024).. Recovery-oriented care in Teams Working with the ART Model in long-term Mental Health care: A Qualitative Study on the Experiences of Service Users and Their Significant Others. Community Ment Health J. https://doi.org/10.1007/s10597-024-01269-4
Flora L. (2023). « Une réponse citoyenne aux contextes et enjeux contemporains, le patient partenaire ?, (Dir. Schaad B.), in(IN) hospitalités hospitalières, conflits, médiation, réconcilation ? Editions médicales Suisse, pp. 53-66
Chansou T., Benattar J.-M. (2020). Enseigner l’exercice médical par l’Art et les savoirs expérientiels avec la participation du patient. ». La revue sur le partenariat de soin avec le patient : Analyses, N°1, le centre d’Innovation du Partenariat avec les Patients et le Public (CI3P), Université Côte d’Azur, pp. 30-49.
Ghadi, V., Flora L., Jarno, P., Lelievre, H. (2019). The Engagement Conundrum of French Users. In M.-P. Pomey, J.-L. Denis, & V. Dumez (Eds.), Patient Engagement : How Patient-provider Partnerships Transform Healthcare Organizations : Springer International Publishing, pp.199-231.